blues1986
06-09-2009, 05:38 PM
I am a 22 year old male who is going through a lot of testing right now to figure out my problem. Let me say that before this past winter, I was never sick nor experienced pain. When this past semester started, is when my odd symptoms started. Here is what I had/still going through in order of when they started:
-electric shock feeling while falling asleep
-acid reflux
-globus sensation
-loss of appetite for a week
-muscle twitching
-muscle cramps
-pins and needles feeling in hands, feet, face... Paraesthesia
-when turning my head left, I get a bizarre nerve shooting sensation down left arm
-eye pain
-chills when it is 70 degrees
-jerking of muscles
-restless leg syndrome
-legs feel fatigued after a few hours at work
-buzzing sensation in hands
-buzzing sensation in legs
-biting tongue while sleeping
-hands shaking
-excessive yawning
-facial pain ie. cheeks
-slurred speech
-stuttering speech
-sleeping a lot, 9 hours or more on days off
-high blood pressure since it all began (only at doctors office... white coat syndrome)
These are the tests that I have had in order of when they were taken:
10 + doctor visits, 2 hospital visits, and 1 er visit
-barium swallow
-blood test 1
-laryngoscopy
-ekg
-urine test
-blood test 2
-chest x-ray
-ct scan
-blood test 3 (vitamin b12 specific) ***
-mri ***
-neurologist appointment this August
*** these tests are pending results
As for the other tests, everything has come back normal. The last few tests have come after I began to stutter. My weight has been all over the map.. from as high as 224 to as low as 209. I am at 215 currently.
The other day I had a weird experience when I opened the dishwasher (just as it finished) there was a rush of hot steam. I had this unusual feeling rush through me. That's when I learned of heat tolerance.
My doctor, who I am changing, is not really sure what I have. I have had two different docs, mine and the one at the hospital, say that I need to see a neurologist. I am stressed, especially since the stuttering started.
My doctor even joked when this all started by saying: "What's the matter? You think you have MS?"
My mother already decided I need a better doctor. We are waiting for the MRI results to go forward.
During the last doctor visit, my doctor began asking me a lot of questions that pertain to MS, and then ordered an MRI. So I am guessing, ONLY GUESSING, that she might have MS on her mind.
It may be hard to believe that I went through all this... but I have, and still am. I can not count how many medications that I have been on. The one I really wanted, some for the stress, my doctor refused to give me.
-electric shock feeling while falling asleep
-acid reflux
-globus sensation
-loss of appetite for a week
-muscle twitching
-muscle cramps
-pins and needles feeling in hands, feet, face... Paraesthesia
-when turning my head left, I get a bizarre nerve shooting sensation down left arm
-eye pain
-chills when it is 70 degrees
-jerking of muscles
-restless leg syndrome
-legs feel fatigued after a few hours at work
-buzzing sensation in hands
-buzzing sensation in legs
-biting tongue while sleeping
-hands shaking
-excessive yawning
-facial pain ie. cheeks
-slurred speech
-stuttering speech
-sleeping a lot, 9 hours or more on days off
-high blood pressure since it all began (only at doctors office... white coat syndrome)
These are the tests that I have had in order of when they were taken:
10 + doctor visits, 2 hospital visits, and 1 er visit
-barium swallow
-blood test 1
-laryngoscopy
-ekg
-urine test
-blood test 2
-chest x-ray
-ct scan
-blood test 3 (vitamin b12 specific) ***
-mri ***
-neurologist appointment this August
*** these tests are pending results
As for the other tests, everything has come back normal. The last few tests have come after I began to stutter. My weight has been all over the map.. from as high as 224 to as low as 209. I am at 215 currently.
The other day I had a weird experience when I opened the dishwasher (just as it finished) there was a rush of hot steam. I had this unusual feeling rush through me. That's when I learned of heat tolerance.
My doctor, who I am changing, is not really sure what I have. I have had two different docs, mine and the one at the hospital, say that I need to see a neurologist. I am stressed, especially since the stuttering started.
My doctor even joked when this all started by saying: "What's the matter? You think you have MS?"
My mother already decided I need a better doctor. We are waiting for the MRI results to go forward.
During the last doctor visit, my doctor began asking me a lot of questions that pertain to MS, and then ordered an MRI. So I am guessing, ONLY GUESSING, that she might have MS on her mind.
It may be hard to believe that I went through all this... but I have, and still am. I can not count how many medications that I have been on. The one I really wanted, some for the stress, my doctor refused to give me.
Sponsor
blues1986
06-09-2009, 05:49 PM
Forgot to mention that for the first time in my life, I got the flu. It may be hard to believe, but I never had the flu before. That lasted for a good week and a half which turned into a "pretty good" ear infection. That lasted for a week or so, but cleared up after some antibiotics. Within hours of running out of antibiotics for the ear infection, I began to feel this pressure behind my eyes. It turned into a headache, and finally was told I had a sinus infection. I went on antibiotics again, and after three weeks was able to beat it.
As you can see, I have been one sick person for the last 4 months. This is the first time I have ever been this sick.
As you can see, I have been one sick person for the last 4 months. This is the first time I have ever been this sick.
Jen Marsters
06-09-2009, 06:15 PM
Hi blues1986,
If the neurologist thinks it could be MS he/she will have you do a spinal tap. While MS is pretty rare in men it still does happen, which may be why your original doctor dismissed your symptoms. However, there is still a huge chance that it is something completely unrelated and hopefully easily treated with the right doctor. Good luck!
If the neurologist thinks it could be MS he/she will have you do a spinal tap. While MS is pretty rare in men it still does happen, which may be why your original doctor dismissed your symptoms. However, there is still a huge chance that it is something completely unrelated and hopefully easily treated with the right doctor. Good luck!
MSNik
06-09-2009, 07:17 PM
I completely disagree. The spinal tap is the last resort, and not always used....since you had an MRI, can you elaborate? Was it of the head and Cspine, and did they use contrast? If they did, they would have pulled you out before it was over, injected something into your vein in your arm and then sent you back for more pictures....contrast is usually used, because it will pick up very tiny lesions which sometimes dont appear on a film (without it).
A spinal tap, will show Obands, in some people, Obands usually point towards an infection or immune system issue, however its not very accurate with MS...if you have NOTHING on the MRI, and nothing on any other tests, and all your blood work (deficiencies etc) are normal, then they MIGHT want to do a spinal tap (or lumbar puncture) but it will take awhile to rule out everything else, before that is suggested....and even if it is, its not a conclusive test.
MS is diagnosed by ruling out everything else, and yes, allot of your symtoms do sound neurological, however there are hundreds of things which this could be, and not all of your symtoms sound like MS...the flu, for instance, has nothing to do with MS. The lack of appetitite, weight loss, acid reflux, none of these are MS symtoms, HOWEVER it cant be ruled out that the anxiety you are experiencing while dealing with this mess COULD very well be causing those things! It could be related, even if it isnt part of the disease. Does it sound like MS? 50-50 chance on this one...Id say that there are way too many things to rule out before you should be thinking it. Since there are no tests FOR MS, conclusive tests- your in for some serious work ups with the new doctor. My suggestion is that you start keeping a journal of what symtoms hit you, how long they last- what brings them on or helps relieve them...keep a journal with all the tests you have had done, the dates and places, and do your very best to keep copies of the results...Especially blood work and films (MRIs) and reports, these things will help when you change docs, so they dont have to repeat everything and if they do, they'll have a base to start from.
Your in NY? Some of the best MS docs in the world are in NY and NJ....consider finding a good MS specialist (you can ask for recommendations here) and start there. MS specialist both rule out AND diagnosis MS...
Wishing you well.....remember, you are not alone, we are here if we can help you!
Nikki
A spinal tap, will show Obands, in some people, Obands usually point towards an infection or immune system issue, however its not very accurate with MS...if you have NOTHING on the MRI, and nothing on any other tests, and all your blood work (deficiencies etc) are normal, then they MIGHT want to do a spinal tap (or lumbar puncture) but it will take awhile to rule out everything else, before that is suggested....and even if it is, its not a conclusive test.
MS is diagnosed by ruling out everything else, and yes, allot of your symtoms do sound neurological, however there are hundreds of things which this could be, and not all of your symtoms sound like MS...the flu, for instance, has nothing to do with MS. The lack of appetitite, weight loss, acid reflux, none of these are MS symtoms, HOWEVER it cant be ruled out that the anxiety you are experiencing while dealing with this mess COULD very well be causing those things! It could be related, even if it isnt part of the disease. Does it sound like MS? 50-50 chance on this one...Id say that there are way too many things to rule out before you should be thinking it. Since there are no tests FOR MS, conclusive tests- your in for some serious work ups with the new doctor. My suggestion is that you start keeping a journal of what symtoms hit you, how long they last- what brings them on or helps relieve them...keep a journal with all the tests you have had done, the dates and places, and do your very best to keep copies of the results...Especially blood work and films (MRIs) and reports, these things will help when you change docs, so they dont have to repeat everything and if they do, they'll have a base to start from.
Your in NY? Some of the best MS docs in the world are in NY and NJ....consider finding a good MS specialist (you can ask for recommendations here) and start there. MS specialist both rule out AND diagnosis MS...
Wishing you well.....remember, you are not alone, we are here if we can help you!
Nikki
blues1986
06-09-2009, 09:46 PM
I completely disagree. The spinal tap is the last resort, and not always used....since you had an MRI, can you elaborate? Was it of the head and Cspine, and did they use contrast? If they did, they would have pulled you out before it was over, injected something into your vein in your arm and then sent you back for more pictures....contrast is usually used, because it will pick up very tiny lesions which sometimes dont appear on a film (without it).
A spinal tap, will show Obands, in some people, Obands usually point towards an infection or immune system issue, however its not very accurate with MS...if you have NOTHING on the MRI, and nothing on any other tests, and all your blood work (deficiencies etc) are normal, then they MIGHT want to do a spinal tap (or lumbar puncture) but it will take awhile to rule out everything else, before that is suggested....and even if it is, its not a conclusive test.
MS is diagnosed by ruling out everything else, and yes, allot of your symtoms do sound neurological, however there are hundreds of things which this could be, and not all of your symtoms sound like MS...the flu, for instance, has nothing to do with MS. The lack of appetitite, weight loss, acid reflux, none of these are MS symtoms, HOWEVER it cant be ruled out that the anxiety you are experiencing while dealing with this mess COULD very well be causing those things! It could be related, even if it isnt part of the disease. Does it sound like MS? 50-50 chance on this one...Id say that there are way too many things to rule out before you should be thinking it. Since there are no tests FOR MS, conclusive tests- your in for some serious work ups with the new doctor. My suggestion is that you start keeping a journal of what symtoms hit you, how long they last- what brings them on or helps relieve them...keep a journal with all the tests you have had done, the dates and places, and do your very best to keep copies of the results...Especially blood work and films (MRIs) and reports, these things will help when you change docs, so they dont have to repeat everything and if they do, they'll have a base to start from.
Your in NY? Some of the best MS docs in the world are in NY and NJ....consider finding a good MS specialist (you can ask for recommendations here) and start there. MS specialist both rule out AND diagnosis MS...
Wishing you well.....remember, you are not alone, we are here if we can help you!
Nikki
The MRI was only of the head and yes contrast was used. Does any one symptom jump out as MS or are there a few cluster of them that point toward it?
I am actually in PA at the moment, and that is where all of my testing has been done.
A spinal tap, will show Obands, in some people, Obands usually point towards an infection or immune system issue, however its not very accurate with MS...if you have NOTHING on the MRI, and nothing on any other tests, and all your blood work (deficiencies etc) are normal, then they MIGHT want to do a spinal tap (or lumbar puncture) but it will take awhile to rule out everything else, before that is suggested....and even if it is, its not a conclusive test.
MS is diagnosed by ruling out everything else, and yes, allot of your symtoms do sound neurological, however there are hundreds of things which this could be, and not all of your symtoms sound like MS...the flu, for instance, has nothing to do with MS. The lack of appetitite, weight loss, acid reflux, none of these are MS symtoms, HOWEVER it cant be ruled out that the anxiety you are experiencing while dealing with this mess COULD very well be causing those things! It could be related, even if it isnt part of the disease. Does it sound like MS? 50-50 chance on this one...Id say that there are way too many things to rule out before you should be thinking it. Since there are no tests FOR MS, conclusive tests- your in for some serious work ups with the new doctor. My suggestion is that you start keeping a journal of what symtoms hit you, how long they last- what brings them on or helps relieve them...keep a journal with all the tests you have had done, the dates and places, and do your very best to keep copies of the results...Especially blood work and films (MRIs) and reports, these things will help when you change docs, so they dont have to repeat everything and if they do, they'll have a base to start from.
Your in NY? Some of the best MS docs in the world are in NY and NJ....consider finding a good MS specialist (you can ask for recommendations here) and start there. MS specialist both rule out AND diagnosis MS...
Wishing you well.....remember, you are not alone, we are here if we can help you!
Nikki
The MRI was only of the head and yes contrast was used. Does any one symptom jump out as MS or are there a few cluster of them that point toward it?
I am actually in PA at the moment, and that is where all of my testing has been done.
MSJayhawk
06-09-2009, 09:59 PM
The MRI was only of the head and yes contrast was used. Does any one symptom jump out as MS or are there a few cluster of them that point toward it?
I am actually in PA at the moment, and that is where all of my testing has been done.
The problem with MS symptoms is that there are many disorders which will present with the same symptoms. There is no "magic" symptom to say 'MS'. I wish there were!! The pathway to diagnosis is perilous and patience testing. You need to run the gauntlet of tests and allow your doctor to exclude what you do not have. In the end, with nothing else to exclude, you MIGHT get a diagnosis of MS or the dreaded shoulder shrug and puzzled look.
I am actually in PA at the moment, and that is where all of my testing has been done.
The problem with MS symptoms is that there are many disorders which will present with the same symptoms. There is no "magic" symptom to say 'MS'. I wish there were!! The pathway to diagnosis is perilous and patience testing. You need to run the gauntlet of tests and allow your doctor to exclude what you do not have. In the end, with nothing else to exclude, you MIGHT get a diagnosis of MS or the dreaded shoulder shrug and puzzled look.
blues1986
06-09-2009, 10:20 PM
The problem with MS symptoms is that there are many disorders which will present with the same symptoms. There is no "magic" symptom to say 'MS'. I wish there were!! The pathway to diagnosis is perilous and patience testing. You need to run the gauntlet of tests and allow your doctor to exclude what you do not have. In the end, with nothing else to exclude, you MIGHT get a diagnosis of MS or the dreaded shoulder shrug and puzzled look.
I am already drained from these previous tests. My arms look terrible from all the needles that have been stuck in me over the last few weeks.... and I am terrified of needles.
I think my doctor is more concerned than I am. At first she was "well, let's see what happens in a few weeks." Now she is "you have an MRI tomorrow and a neurologist appointment in August." She seems to be fast tracking EVERYTHING. Its not a bad thing, but I am just wondering where was this hustle a few months ago when I first brought up there was something way off?
Just venting... I don't like doctors. They make me very nervous.
I am already drained from these previous tests. My arms look terrible from all the needles that have been stuck in me over the last few weeks.... and I am terrified of needles.
I think my doctor is more concerned than I am. At first she was "well, let's see what happens in a few weeks." Now she is "you have an MRI tomorrow and a neurologist appointment in August." She seems to be fast tracking EVERYTHING. Its not a bad thing, but I am just wondering where was this hustle a few months ago when I first brought up there was something way off?
Just venting... I don't like doctors. They make me very nervous.
MSJayhawk
06-10-2009, 12:01 AM
LOL, bedside manners make or break a doctor for me! That said, I do not think they are rushing you too much. Early on they might want to make sure that your symptoms were not one time incidents. (My thoughts only!! :) )
August is actually pretty good. If I miss a doctors appointment, it takes 6-8 months to see her. I go twice a year for my check-up. Once you get through the "needles", you should do pretty well!! (unless you go the med treatment route.)
August is actually pretty good. If I miss a doctors appointment, it takes 6-8 months to see her. I go twice a year for my check-up. Once you get through the "needles", you should do pretty well!! (unless you go the med treatment route.)
MSNik
06-10-2009, 06:51 PM
Hi Blues. First question, where are you in PA? im from Philly, live in NJ and can give you a boatload of recommended MS specialists....if you are anywhere near Philly...Jefferson and Pennsylvania MS clinics are nationally regarded...if you are anywhere near Jersey, one of the most recognized and highly published MS specialists is at Robert Wood Johnson in New Brunswick, half way between Phila and NYC....ask, Ill help you with names.
Next, please search out the McDonalds Criteria. Its all over Healthboards. This is the criteria which is used to diagnos MS....there are several factors which have to be met before a doctor can say MS or not MS...and also, please be sure your insurance is intact before you get a diagnosis...its almost impossible to get insurance (if you dont already have it) with a MS dx...once you have that label, you cant let your insurance lapase.....you will always be covered as long as you dont have lapses, even if you change insurance companies, change jobs, etc...as long as there is no lapse in the coverage, youre cool...its trying to get insurance, when you dont already have it- that is a problem!
Your last issue, being uncomfortable with doctors, is not one I can help you with, but do suggest getting over. And needles? If you have MS, all MS meds are currently administrered by needles right now. Oral meds, are coming, but not yet availalbe.. So, youre going to have to get past that! I was terrified of needles myself..but learned to do my shot very quickly. We will discuss that if the time comes...meanwhile, just get used to doctors! Youll be seeing quite a few in the next year! Always make your appointments before you leave for next time, so you have an appointment on the books! It can take forever to get in, even with an emergency, but is easier to call and say I cant wait till August, if you already have an appointment, then trying to get one from scratch!
Read up on McDonalds criteria (the revised version, the first one is outdated) and ask any questions you have here....youre going to be okay- most of what you are going thru is very stressful, and we understand that...but you have to also realize ALL of us have been thru what you are going thru and survived. You will, too!!!
hugs,
nikki
Next, please search out the McDonalds Criteria. Its all over Healthboards. This is the criteria which is used to diagnos MS....there are several factors which have to be met before a doctor can say MS or not MS...and also, please be sure your insurance is intact before you get a diagnosis...its almost impossible to get insurance (if you dont already have it) with a MS dx...once you have that label, you cant let your insurance lapase.....you will always be covered as long as you dont have lapses, even if you change insurance companies, change jobs, etc...as long as there is no lapse in the coverage, youre cool...its trying to get insurance, when you dont already have it- that is a problem!
Your last issue, being uncomfortable with doctors, is not one I can help you with, but do suggest getting over. And needles? If you have MS, all MS meds are currently administrered by needles right now. Oral meds, are coming, but not yet availalbe.. So, youre going to have to get past that! I was terrified of needles myself..but learned to do my shot very quickly. We will discuss that if the time comes...meanwhile, just get used to doctors! Youll be seeing quite a few in the next year! Always make your appointments before you leave for next time, so you have an appointment on the books! It can take forever to get in, even with an emergency, but is easier to call and say I cant wait till August, if you already have an appointment, then trying to get one from scratch!
Read up on McDonalds criteria (the revised version, the first one is outdated) and ask any questions you have here....youre going to be okay- most of what you are going thru is very stressful, and we understand that...but you have to also realize ALL of us have been thru what you are going thru and survived. You will, too!!!
hugs,
nikki
blues1986
06-10-2009, 09:46 PM
MSNik thanks for your reply, very helpful. I have ok insurance now, but my father is about to get a NY state job and I will be getting very good insurance in a few weeks.
I am currently in western pa with my mother, but I am moving back home to WNY next week.... of course I am waiting for my MRI before I do anything.
I am currently in western pa with my mother, but I am moving back home to WNY next week.... of course I am waiting for my MRI before I do anything.
MSNik
06-10-2009, 10:32 PM
you seem to be covered with insurance then, Blues...just dont let anything lapse, where you dont have coverage and youll be fine.
When you get that MRI, while you are there- before the test begins- ASK FOR A COPY OF THE FILMS OR CD! The ordering physician will be able to give you a copy of the report when you see him however, you definately want copies of the CD or films WHEN YOU MOVE TO NY because getting them from PA is going to be a problem. YOu should start getting copies of everything- blood work, reports, exams, anything you can get your hands on and start a folder to have with you.....there is NOTHING WORSE then having to get these tests done again because they cant get them from your original doc, or worse yet- having to pay for them 6 months down the road- or still worse yet- having a relapse or attack, and having to wait 3 weeks until the old docs staff gets around to forwarding them to the new doc. Get the picture? ! :dizzy:
Having everything on file is always a good idea. I have MRIs every 6 months- and each time I see my Neuro aftewards, he wants both the new films, and the previous films from 6 months ago, to make a comparison. Same with my eye doc...I have had Optical Neuritis several times and see a Neuro-Opthamologist...I go once a year now; but each time, he asks me to bring the last 2 MRI films...right now, I could wallpaper my bathroom with films of my head and spine!
Your going to be okay pal....keep your chin up and keep positiive and truly, really know- that MS doesnt have to change your life (if thats what it is) and that all of us here have been where you are....anxiety and fear will cause you more problems then the disease...so chin up and hang tough.
Nikki
When you get that MRI, while you are there- before the test begins- ASK FOR A COPY OF THE FILMS OR CD! The ordering physician will be able to give you a copy of the report when you see him however, you definately want copies of the CD or films WHEN YOU MOVE TO NY because getting them from PA is going to be a problem. YOu should start getting copies of everything- blood work, reports, exams, anything you can get your hands on and start a folder to have with you.....there is NOTHING WORSE then having to get these tests done again because they cant get them from your original doc, or worse yet- having to pay for them 6 months down the road- or still worse yet- having a relapse or attack, and having to wait 3 weeks until the old docs staff gets around to forwarding them to the new doc. Get the picture? ! :dizzy:
Having everything on file is always a good idea. I have MRIs every 6 months- and each time I see my Neuro aftewards, he wants both the new films, and the previous films from 6 months ago, to make a comparison. Same with my eye doc...I have had Optical Neuritis several times and see a Neuro-Opthamologist...I go once a year now; but each time, he asks me to bring the last 2 MRI films...right now, I could wallpaper my bathroom with films of my head and spine!
Your going to be okay pal....keep your chin up and keep positiive and truly, really know- that MS doesnt have to change your life (if thats what it is) and that all of us here have been where you are....anxiety and fear will cause you more problems then the disease...so chin up and hang tough.
Nikki
blues1986
06-10-2009, 11:06 PM
you seem to be covered with insurance then, Blues...just dont let anything lapse, where you dont have coverage and youll be fine.
When you get that MRI, while you are there- before the test begins- ASK FOR A COPY OF THE FILMS OR CD! The ordering physician will be able to give you a copy of the report when you see him however, you definately want copies of the CD or films WHEN YOU MOVE TO NY because getting them from PA is going to be a problem. YOu should start getting copies of everything- blood work, reports, exams, anything you can get your hands on and start a folder to have with you.....there is NOTHING WORSE then having to get these tests done again because they cant get them from your original doc, or worse yet- having to pay for them 6 months down the road- or still worse yet- having a relapse or attack, and having to wait 3 weeks until the old docs staff gets around to forwarding them to the new doc. Get the picture? ! :dizzy:
Having everything on file is always a good idea. I have MRIs every 6 months- and each time I see my Neuro aftewards, he wants both the new films, and the previous films from 6 months ago, to make a comparison. Same with my eye doc...I have had Optical Neuritis several times and see a Neuro-Opthamologist...I go once a year now; but each time, he asks me to bring the last 2 MRI films...right now, I could wallpaper my bathroom with films of my head and spine!
Your going to be okay pal....keep your chin up and keep positiive and truly, really know- that MS doesnt have to change your life (if thats what it is) and that all of us here have been where you are....anxiety and fear will cause you more problems then the disease...so chin up and hang tough.
Nikki
Does it cost money to get a copy of all your films? I had a CT scan, chest x-ray (no entirely sure why for that one) and now the MRI, do I have to pay for these copies?
I am looking deeper into certain signs of MS and I am looking into the timing of several of them that I experienced. I remember the moment when I got the pins and needles feeling, it was accompanied with a headache that was on the very top of my head. (Never had a headache like that before) The pins and needles experience was something I have never had before. It would first strike in the legs, then the arms, and finally the face. I first thought that it was a reaction to medication, but the pins and needles sensation wasn't a primary or even a secondary side effect of this particular drug. Only two or three people I read about had SLIGHT pins and needles, what I experienced was full blown.
It was also around that time when I began to get the heavy muscle twitching, and occasional spasm. The twitching has fallen off by 75% since that initial rush I had in the beginning.
Could this have been an episode?
I am not jumping to any conclusion, but every time I look back, it reminds me of another "thing" that I just brushed aside thinking it was nothing. In fact, the first abnormal thing I had happen to me occurred in mid January. As I am falling asleep, I would get this feeling like electricity rushing through my chest downward. It took me several nights to realize I wasn't dreaming it. It doesn't hurt, but it jots me awake. I thought I saw the end of these, as they disappeared for a while. Several nights ago, it happened again.. first time in about 2 months.
When you get that MRI, while you are there- before the test begins- ASK FOR A COPY OF THE FILMS OR CD! The ordering physician will be able to give you a copy of the report when you see him however, you definately want copies of the CD or films WHEN YOU MOVE TO NY because getting them from PA is going to be a problem. YOu should start getting copies of everything- blood work, reports, exams, anything you can get your hands on and start a folder to have with you.....there is NOTHING WORSE then having to get these tests done again because they cant get them from your original doc, or worse yet- having to pay for them 6 months down the road- or still worse yet- having a relapse or attack, and having to wait 3 weeks until the old docs staff gets around to forwarding them to the new doc. Get the picture? ! :dizzy:
Having everything on file is always a good idea. I have MRIs every 6 months- and each time I see my Neuro aftewards, he wants both the new films, and the previous films from 6 months ago, to make a comparison. Same with my eye doc...I have had Optical Neuritis several times and see a Neuro-Opthamologist...I go once a year now; but each time, he asks me to bring the last 2 MRI films...right now, I could wallpaper my bathroom with films of my head and spine!
Your going to be okay pal....keep your chin up and keep positiive and truly, really know- that MS doesnt have to change your life (if thats what it is) and that all of us here have been where you are....anxiety and fear will cause you more problems then the disease...so chin up and hang tough.
Nikki
Does it cost money to get a copy of all your films? I had a CT scan, chest x-ray (no entirely sure why for that one) and now the MRI, do I have to pay for these copies?
I am looking deeper into certain signs of MS and I am looking into the timing of several of them that I experienced. I remember the moment when I got the pins and needles feeling, it was accompanied with a headache that was on the very top of my head. (Never had a headache like that before) The pins and needles experience was something I have never had before. It would first strike in the legs, then the arms, and finally the face. I first thought that it was a reaction to medication, but the pins and needles sensation wasn't a primary or even a secondary side effect of this particular drug. Only two or three people I read about had SLIGHT pins and needles, what I experienced was full blown.
It was also around that time when I began to get the heavy muscle twitching, and occasional spasm. The twitching has fallen off by 75% since that initial rush I had in the beginning.
Could this have been an episode?
I am not jumping to any conclusion, but every time I look back, it reminds me of another "thing" that I just brushed aside thinking it was nothing. In fact, the first abnormal thing I had happen to me occurred in mid January. As I am falling asleep, I would get this feeling like electricity rushing through my chest downward. It took me several nights to realize I wasn't dreaming it. It doesn't hurt, but it jots me awake. I thought I saw the end of these, as they disappeared for a while. Several nights ago, it happened again.. first time in about 2 months.
MSNik
06-11-2009, 06:33 PM
Hi there. It absolutely should NOT cost you a dime to get copies of anything that is on film...or CD. HOwever, since its "past tense" meaning you had it done a week, month or year ago- it might take them a few days to make copies for you, so call them and find out...
The pins and needles thing can be allot of things. For instance. When I woke up 3+ years ago, my left hand was numb. Exactly like when your foot goes to sleep and you have to bang on it to get the blood circulating....I smacked it against the bed, then the shower wall, then my desk at work...it wouldnt stop. It was sort of painful- mostly just aggravating! After three days of this, it was driving me crazy and I was sure I had had a stroke or something- so I called my Doctor. He thought maybe it was Carpal Tunnel...so brought me in for some tests....those tests showed there was nothing wrong with my hand or fingers...so then, he thought maybe a pinched nerve- and sent me for a CT scan. Not the test usually used for MS, it did show some abnomalities in my head, but my shoulder/neck area (where they thought I had a pinched nerve) was fine...that CT scan led the radiologist to suggest an MRI and a Neurological Eval.....long story short, I was found to have over 50 lesions in my brain and was 99% sure within a week that I had MS....many, many more tests confirmed it- and life goes on. THE POINT OF THIS IS that in three + years, my tingling and pain has never stopped! A lesion in my brain is causing the pain and tingling in my hand and fingers! Sometimes, when it is really hot and humid, it hurts so bad I want to cut my hand off.....Lyrica, Neurontin, Cymbalta, Capsasium and a host of other drugs for nerve pain have been tried, NOTHING works. I have learned to live with it. I did an online college degree- got my Masters even while being diagnosed. I have 3 kids, and a very needy husband. I travel for my job, and am a director of a large company- nothing stops me. Its allot of mind over matter...but, I do have terrible, lousy, poor me- I hurt all over days. When this happens, I really "Get it".
So, is your tingling a symtom? A episode? is the twitching related, or simply a one time thing? A good MRI can tell you if you have had nerve damage- or an attack on a nerve. Keep in mind that a lesion, is a scar....the scar is caused by an attack on a nerve. The nerves are covered by Myelin Sheaths- if the attack is "strong" enough, then it can cause permenant damage (like my hands) if it is minor, the nerve can regenerate and repair itself....twitching can be musclular and not nerve....unrelated to MS. Or it can be a small attack on a nerve, not necesarily permenant or constant....its a very tough call. The MS drugs are shots, which i know you hate- but the idea behind them is to stop future attacks, eliminate future lesions, thus reducing future problems. Does it work? Some say yes, others say no. I can honestly say that in 3 years of shooting Rebif into my body, Ive not had one more episode, no new symptoms and absolutely no problems. I live a good life, even with MS...
Thats allot of info and Im sorry if its confusing, ask and Ill clarify anything that didnt make sense....but, yeah- go call and see if you can get those copies of those tests....hospitals will give them to you. MRI centers will give them to you- and NO, there shouldnt be a fee....but make sure you tell them you are moving out of state and need copies for your new doctor. They sometimes hesitate to give them if they dont have a reason.
Good luck!
Nikki
The pins and needles thing can be allot of things. For instance. When I woke up 3+ years ago, my left hand was numb. Exactly like when your foot goes to sleep and you have to bang on it to get the blood circulating....I smacked it against the bed, then the shower wall, then my desk at work...it wouldnt stop. It was sort of painful- mostly just aggravating! After three days of this, it was driving me crazy and I was sure I had had a stroke or something- so I called my Doctor. He thought maybe it was Carpal Tunnel...so brought me in for some tests....those tests showed there was nothing wrong with my hand or fingers...so then, he thought maybe a pinched nerve- and sent me for a CT scan. Not the test usually used for MS, it did show some abnomalities in my head, but my shoulder/neck area (where they thought I had a pinched nerve) was fine...that CT scan led the radiologist to suggest an MRI and a Neurological Eval.....long story short, I was found to have over 50 lesions in my brain and was 99% sure within a week that I had MS....many, many more tests confirmed it- and life goes on. THE POINT OF THIS IS that in three + years, my tingling and pain has never stopped! A lesion in my brain is causing the pain and tingling in my hand and fingers! Sometimes, when it is really hot and humid, it hurts so bad I want to cut my hand off.....Lyrica, Neurontin, Cymbalta, Capsasium and a host of other drugs for nerve pain have been tried, NOTHING works. I have learned to live with it. I did an online college degree- got my Masters even while being diagnosed. I have 3 kids, and a very needy husband. I travel for my job, and am a director of a large company- nothing stops me. Its allot of mind over matter...but, I do have terrible, lousy, poor me- I hurt all over days. When this happens, I really "Get it".
So, is your tingling a symtom? A episode? is the twitching related, or simply a one time thing? A good MRI can tell you if you have had nerve damage- or an attack on a nerve. Keep in mind that a lesion, is a scar....the scar is caused by an attack on a nerve. The nerves are covered by Myelin Sheaths- if the attack is "strong" enough, then it can cause permenant damage (like my hands) if it is minor, the nerve can regenerate and repair itself....twitching can be musclular and not nerve....unrelated to MS. Or it can be a small attack on a nerve, not necesarily permenant or constant....its a very tough call. The MS drugs are shots, which i know you hate- but the idea behind them is to stop future attacks, eliminate future lesions, thus reducing future problems. Does it work? Some say yes, others say no. I can honestly say that in 3 years of shooting Rebif into my body, Ive not had one more episode, no new symptoms and absolutely no problems. I live a good life, even with MS...
Thats allot of info and Im sorry if its confusing, ask and Ill clarify anything that didnt make sense....but, yeah- go call and see if you can get those copies of those tests....hospitals will give them to you. MRI centers will give them to you- and NO, there shouldnt be a fee....but make sure you tell them you are moving out of state and need copies for your new doctor. They sometimes hesitate to give them if they dont have a reason.
Good luck!
Nikki
blues1986
06-11-2009, 08:17 PM
I just wanted to describe some symptoms that I have been having in the last week. Let me know your impressions on them.
All in the last week:
-slurring words (Having trouble articulating some words)
-stuttering pretty bad (Almost like I have forgotten how to start a sentence)
-muscle twitching... still
-muscle burning (One day it would be upper left arm, the next it is lower right hand)
-yawning excessively (I can not believe how many times I can yawn in a 10 minute span)
-sleep (I can never get enough. I slept for 11 hours today and still had trouble getting up)
-brain fog (I tend to be pretty sharp, but yesterday at work was horrible. It felt like I was up but my brain was still sleeping. I was forgetting simple things)
Most of the worst symptoms are at night when I am lying down ready for bed.
-buzzing sensation in my hands (I can feel it, but I can not see my hands shaking)
-buzzing sensation in legs (Same as the hands, but now in the legs)
-electrical jolt (had them when this all began, now they are back. Feels like a cold rush of electricity going through me. Thought it could be a hypnic jerk, but the description of a hypnic jerk is not quite what I am feeling.)
For me, I am at a loss. It seems like a light switch has been turned on and all these things came all at once. What do you think?
All in the last week:
-slurring words (Having trouble articulating some words)
-stuttering pretty bad (Almost like I have forgotten how to start a sentence)
-muscle twitching... still
-muscle burning (One day it would be upper left arm, the next it is lower right hand)
-yawning excessively (I can not believe how many times I can yawn in a 10 minute span)
-sleep (I can never get enough. I slept for 11 hours today and still had trouble getting up)
-brain fog (I tend to be pretty sharp, but yesterday at work was horrible. It felt like I was up but my brain was still sleeping. I was forgetting simple things)
Most of the worst symptoms are at night when I am lying down ready for bed.
-buzzing sensation in my hands (I can feel it, but I can not see my hands shaking)
-buzzing sensation in legs (Same as the hands, but now in the legs)
-electrical jolt (had them when this all began, now they are back. Feels like a cold rush of electricity going through me. Thought it could be a hypnic jerk, but the description of a hypnic jerk is not quite what I am feeling.)
For me, I am at a loss. It seems like a light switch has been turned on and all these things came all at once. What do you think?
MSNik
06-11-2009, 11:09 PM
Blues, I wish I could tell you what I think and have it make sense. I dont want to offend you in any way, but much of what you are describing is so much anxiety like.....and no wonder. If I was going thru what you are going thru, and for the length of time that youve been dealing with all this- Id be a wreck. I think you are handling it very well by the way.
You sound like a very together person, so Im in NO WAY suggesting that this is in your head. Its real. Very real....however, allot of what your body is doing, might and I repeat- MIGHT be a reaction to the not knowing and the anxiety that accompanies not knowing.
The lack of sleep, even though you are sleeping, is probably from stress. Stress can also trigger a great amount of the things you are describing- and when you arent getting "good" sleep- then you arent rested, and therefore that can cause the dizziness and fog you describe. Can you talk to your GP now about a sleep aid? Ambien, or something which will put you in a good deep sleep 8 hours a night? Your body will thank you....the trembling and electrical things you are talking about, sound neurological...thats something that 100% should be picked up by the MRI...so until you have the results of that, youre going to be in limbo...there are allot of drugs out there, Flexeril, Klonopin, and a host of others, which will both help you sleep and help that spasm-ey feeling...your doc needs to get you on something. The slurring words and stuttering- again, could be from lack of "good" sleep? Or could be neurological...and again, MRI will help point towards the cause. They need to MRI both your brain and Cspine- and do it with and without contrast...lesions can be anywhere and depending on where they are will depend on the symtoms you have.
Truthfully, nothing you are describing is life threatening, if that helps at all- and that means that each of these symtoms has a pill which will help you to cope- but you need a good doctor, one who will work with you to help you deal with these things. If I had any advice at all, it would be try taking an over the counter sleep aide, until you can get something prescribed for you. Even Tylenol PM couldnt hurt you....and stay away from caffeine, sugar, things that can stimulate your nervous system after 3 pm...no exercise in the evenings- try to really relax yourself when you get home from work and do nothing...I know this isnt real helpful, but again, I remind you- you are not alone...there are a ton of people with MS, and without, who are dealing with very much the same symtoms and surviving...its frustrating, but you will get answers. Too bad you cant see another doc now...but in the meantime, a call to your GP describing these things, might get you a prescription to help with the symtoms. Ask about sleepaides, and about muscle spasms...see what they say.
Good luck.
N
You sound like a very together person, so Im in NO WAY suggesting that this is in your head. Its real. Very real....however, allot of what your body is doing, might and I repeat- MIGHT be a reaction to the not knowing and the anxiety that accompanies not knowing.
The lack of sleep, even though you are sleeping, is probably from stress. Stress can also trigger a great amount of the things you are describing- and when you arent getting "good" sleep- then you arent rested, and therefore that can cause the dizziness and fog you describe. Can you talk to your GP now about a sleep aid? Ambien, or something which will put you in a good deep sleep 8 hours a night? Your body will thank you....the trembling and electrical things you are talking about, sound neurological...thats something that 100% should be picked up by the MRI...so until you have the results of that, youre going to be in limbo...there are allot of drugs out there, Flexeril, Klonopin, and a host of others, which will both help you sleep and help that spasm-ey feeling...your doc needs to get you on something. The slurring words and stuttering- again, could be from lack of "good" sleep? Or could be neurological...and again, MRI will help point towards the cause. They need to MRI both your brain and Cspine- and do it with and without contrast...lesions can be anywhere and depending on where they are will depend on the symtoms you have.
Truthfully, nothing you are describing is life threatening, if that helps at all- and that means that each of these symtoms has a pill which will help you to cope- but you need a good doctor, one who will work with you to help you deal with these things. If I had any advice at all, it would be try taking an over the counter sleep aide, until you can get something prescribed for you. Even Tylenol PM couldnt hurt you....and stay away from caffeine, sugar, things that can stimulate your nervous system after 3 pm...no exercise in the evenings- try to really relax yourself when you get home from work and do nothing...I know this isnt real helpful, but again, I remind you- you are not alone...there are a ton of people with MS, and without, who are dealing with very much the same symtoms and surviving...its frustrating, but you will get answers. Too bad you cant see another doc now...but in the meantime, a call to your GP describing these things, might get you a prescription to help with the symtoms. Ask about sleepaides, and about muscle spasms...see what they say.
Good luck.
N
blues1986
06-12-2009, 05:31 PM
Got a call from my mother who talked to the doctor (not sure why my doctor didn't call me, she has every other time) anyway... the MRI and blood tests were negative. Good, I guess. It still does not answer why I am feeling all these things.
My doctor has given me a prescription from the stress and anxiety. I guess we'll see...
My doctor has given me a prescription from the stress and anxiety. I guess we'll see...
MSJayhawk
06-12-2009, 05:45 PM
Blood work will only exclude blood borne diseases. You should have another MRI within 6-12 months because lesions may not immediately appear. I hope you do not have MS! :angel:
MSNik
06-12-2009, 07:34 PM
I would agree with Jayhawk, depending on what they were testing for, blood work doesnt tell you much. It will tell if you have a deficiency, like Vitamin B or D...that can make you feel lousy....most Lyme tests come back negative, even when they are positive. There are very few labs in the country who can get positive results the first time. Look into Igenex, and ask your doctor about them...he will know.
A negative MRI - negative for what? No lesions showed up? As I recall, they only did your head....lesions can be in the C spine, T Spine and even Lumbar spine on occasion. You really need a new doctor Blues....this one is NOT being thorough at all.
And, Jayhawk is right again. MRIs sometimes do not pick up a very small lesion, which can be your culprit- until it is large enough to view. Its possible its there, and they arent seeing it. Get those films and ask for a report from the doctor...take them to your next doc for a baseline and second opinion.
Something is very strange about the lack of care you are getting here...
Anxiety and stress are terrible things to deal with...so hopefully, whatever they called in, will help you. Was it Xanax? That seems to be most docs drug of choice. Ive taken it, and yes- it does take the edge off...
Hang in there..answers are out there, and you are not alone in your journey to an answer. LImboland- not much fun, huh? Next time, try Disney world!
Hugs,
Nikki
A negative MRI - negative for what? No lesions showed up? As I recall, they only did your head....lesions can be in the C spine, T Spine and even Lumbar spine on occasion. You really need a new doctor Blues....this one is NOT being thorough at all.
And, Jayhawk is right again. MRIs sometimes do not pick up a very small lesion, which can be your culprit- until it is large enough to view. Its possible its there, and they arent seeing it. Get those films and ask for a report from the doctor...take them to your next doc for a baseline and second opinion.
Something is very strange about the lack of care you are getting here...
Anxiety and stress are terrible things to deal with...so hopefully, whatever they called in, will help you. Was it Xanax? That seems to be most docs drug of choice. Ive taken it, and yes- it does take the edge off...
Hang in there..answers are out there, and you are not alone in your journey to an answer. LImboland- not much fun, huh? Next time, try Disney world!
Hugs,
Nikki
blues1986
06-13-2009, 12:18 AM
I am on 5 mg of Lexapro. My doctor, if you can believe this, wants me to see a psychiatrist. She told my mother that I am not suffering from anything, and that all my neurological problems are in my head...(Ironically reminding my mother of my neuro appointment in two months) She says that I am becoming to worried with everything and that all my symptoms are in my head.... Just like the chest pains weren't GERD, and the ear pain wasn't a nasty ear infection, or the headaches wasn't a four week sinus infection. I have no idea where she gets the impression that I am or ever was fabricating symptoms? Every time I went to seek help, there was a medical problem. I guess she feels this time I am lying.
I know my doctor is trying her best, but when you tell a 22 year old that he needs to see a psychiatrist because he is complaining of neurological problems that didn't show up on a blood test or his first MRI, that just reeks of incompetence.
As far as the blood work goes, it was specifically checking for vitamin B12. Today, both my arms are bruised and ravaged with needle marks.
I know my doctor is trying her best, but when you tell a 22 year old that he needs to see a psychiatrist because he is complaining of neurological problems that didn't show up on a blood test or his first MRI, that just reeks of incompetence.
As far as the blood work goes, it was specifically checking for vitamin B12. Today, both my arms are bruised and ravaged with needle marks.
MSNik
06-13-2009, 08:40 PM
Poor guy. I really feel for you! I hope that you show your mom these posts- or at least talk to her about them. This isnt in your head darling. Allot of people get told that- and its very rare that its not a real disease. You seem intelligent, so you DO KNOW that in some cases, people do make up things, or actually believe that they have things- for reasons other then medical....but from everything you have wrote- I sincerely doubt that this is the case.
What I really suggest is a new doctor, which I know- youve got coming...and of course, sticking with my previous answers, keeping a journal of your symtoms, and a copy of as many records as you can get. Maybe forget asking for her office records-;) but a copy of the reports from the lab and the radiologist would be a good idea.
The bruising on your arms, if you are interested, Ive recommended this to many and use it myself. Go to any health food store, or a good supermarket with a health food vitamin section- (you wont find this at Walmart) and look for Arnica gel. Its in a tube, like toothpaste. Its not expensive, about 7$ a tube..its clear, odorless, and kind of feels like Aloe Gel....you rub it into the bruised spots (this works great for any type of bruising or sports injury) and it dissappears, but using it 3-6 times a day helps bruises fade faster. Since I am on Rebif, an injectable MS drug- I use Arnica after every single injection and then try to use it after I get out of the shower on the injection spots and again before I go to sleep...while everyone else is complaining of red marks and bruises from their shots, I can tell you, this helps me tremendously. Its not too late for you to use it from your blood work if you want to try.
Blues- dont let one doctor get you down. it really doesnt sound like this is all in your head and it does sound like she is out of her element with diagnosiing you. Its possible it isnt MS, but its SOMETHING and you deserve to get answers. Keep in mind, many people take up to two years to get a diagnosis for MS, just because their symptoms are so random. When you can, find an MS doctor, one who can both rule out and dx MS....in the journey that he will take, he will also be looking to find anything else, which of course will point him to answers and you to the right doctor for your needs
Hang in there...
Nikki
What I really suggest is a new doctor, which I know- youve got coming...and of course, sticking with my previous answers, keeping a journal of your symtoms, and a copy of as many records as you can get. Maybe forget asking for her office records-;) but a copy of the reports from the lab and the radiologist would be a good idea.
The bruising on your arms, if you are interested, Ive recommended this to many and use it myself. Go to any health food store, or a good supermarket with a health food vitamin section- (you wont find this at Walmart) and look for Arnica gel. Its in a tube, like toothpaste. Its not expensive, about 7$ a tube..its clear, odorless, and kind of feels like Aloe Gel....you rub it into the bruised spots (this works great for any type of bruising or sports injury) and it dissappears, but using it 3-6 times a day helps bruises fade faster. Since I am on Rebif, an injectable MS drug- I use Arnica after every single injection and then try to use it after I get out of the shower on the injection spots and again before I go to sleep...while everyone else is complaining of red marks and bruises from their shots, I can tell you, this helps me tremendously. Its not too late for you to use it from your blood work if you want to try.
Blues- dont let one doctor get you down. it really doesnt sound like this is all in your head and it does sound like she is out of her element with diagnosiing you. Its possible it isnt MS, but its SOMETHING and you deserve to get answers. Keep in mind, many people take up to two years to get a diagnosis for MS, just because their symptoms are so random. When you can, find an MS doctor, one who can both rule out and dx MS....in the journey that he will take, he will also be looking to find anything else, which of course will point him to answers and you to the right doctor for your needs
Hang in there...
Nikki
blues1986
06-13-2009, 10:45 PM
Poor guy. I really feel for you! I hope that you show your mom these posts- or at least talk to her about them. This isnt in your head darling. Allot of people get told that- and its very rare that its not a real disease. You seem intelligent, so you DO KNOW that in some cases, people do make up things, or actually believe that they have things- for reasons other then medical....but from everything you have wrote- I sincerely doubt that this is the case.
What I really suggest is a new doctor, which I know- youve got coming...and of course, sticking with my previous answers, keeping a journal of your symtoms, and a copy of as many records as you can get. Maybe forget asking for her office records-;) but a copy of the reports from the lab and the radiologist would be a good idea.
The bruising on your arms, if you are interested, Ive recommended this to many and use it myself. Go to any health food store, or a good supermarket with a health food vitamin section- (you wont find this at Walmart) and look for Arnica gel. Its in a tube, like toothpaste. Its not expensive, about 7$ a tube..its clear, odorless, and kind of feels like Aloe Gel....you rub it into the bruised spots (this works great for any type of bruising or sports injury) and it dissappears, but using it 3-6 times a day helps bruises fade faster. Since I am on Rebif, an injectable MS drug- I use Arnica after every single injection and then try to use it after I get out of the shower on the injection spots and again before I go to sleep...while everyone else is complaining of red marks and bruises from their shots, I can tell you, this helps me tremendously. Its not too late for you to use it from your blood work if you want to try.
Blues- dont let one doctor get you down. it really doesnt sound like this is all in your head and it does sound like she is out of her element with diagnosiing you. Its possible it isnt MS, but its SOMETHING and you deserve to get answers. Keep in mind, many people take up to two years to get a diagnosis for MS, just because their symptoms are so random. When you can, find an MS doctor, one who can both rule out and dx MS....in the journey that he will take, he will also be looking to find anything else, which of course will point him to answers and you to the right doctor for your needs
Hang in there...
Nikki
I went to see my father and brother today. My father says I need to see his doctor ASAP. My father and brother, twin brother actually, are both EMT's so they know a thing or two.
Last night was a rather tough night. I woke up and I was snapping my head back and forth. This is about the 7th or 8th time I remember doing this in the past month. Soon after, when I regained myself, I remember hearing a swooshing sound going through my head. Can these actually be seizures? There have been a few times when I wake up clenching my tongue. As of today, my tongue is scalloped on both sides... most likely from the teeth clenching down.
This afternoon I was talking to my brother, and I was stuttering like I have never done before. One instance I was stuck on the word "so." I repeated it 4 times before I was able to spurt it out. It might be hard to imagine someone having trouble saying a word as simple as "so"... but I had a mental block, and I just couldn't say it. He was freaked because he finally understood what I was going through.
It has been almost two weeks since my sudden onset of stuttering with the occasional slurring of words. The stuttering is something that really boggles my mind. I used to be a fluent speaker, and now I feel like I have trouble putting a simple sentence together. I am not stressed at all when I stutter. I will be talking hockey with a friend, with no stuttering on my mind, and then bam! I can't talk.
I have tried reading what causes stuttering, but there are not many. I have already had the testing done to rule out most causes. I even read where stress and anxiety are not real causes of stuttering. I believe that because of two reasons: A) If stress caused stuttering, A LOT of people would be stuttering. B) I stutter when I am not stressed.. most times when I am in a very relaxed state of mind.
I should mention, on a lighter side, that it is nice having a twin. When there is something wrong with me... ie. my tongue.... I just look at his to see what it should look like.
What I really suggest is a new doctor, which I know- youve got coming...and of course, sticking with my previous answers, keeping a journal of your symtoms, and a copy of as many records as you can get. Maybe forget asking for her office records-;) but a copy of the reports from the lab and the radiologist would be a good idea.
The bruising on your arms, if you are interested, Ive recommended this to many and use it myself. Go to any health food store, or a good supermarket with a health food vitamin section- (you wont find this at Walmart) and look for Arnica gel. Its in a tube, like toothpaste. Its not expensive, about 7$ a tube..its clear, odorless, and kind of feels like Aloe Gel....you rub it into the bruised spots (this works great for any type of bruising or sports injury) and it dissappears, but using it 3-6 times a day helps bruises fade faster. Since I am on Rebif, an injectable MS drug- I use Arnica after every single injection and then try to use it after I get out of the shower on the injection spots and again before I go to sleep...while everyone else is complaining of red marks and bruises from their shots, I can tell you, this helps me tremendously. Its not too late for you to use it from your blood work if you want to try.
Blues- dont let one doctor get you down. it really doesnt sound like this is all in your head and it does sound like she is out of her element with diagnosiing you. Its possible it isnt MS, but its SOMETHING and you deserve to get answers. Keep in mind, many people take up to two years to get a diagnosis for MS, just because their symptoms are so random. When you can, find an MS doctor, one who can both rule out and dx MS....in the journey that he will take, he will also be looking to find anything else, which of course will point him to answers and you to the right doctor for your needs
Hang in there...
Nikki
I went to see my father and brother today. My father says I need to see his doctor ASAP. My father and brother, twin brother actually, are both EMT's so they know a thing or two.
Last night was a rather tough night. I woke up and I was snapping my head back and forth. This is about the 7th or 8th time I remember doing this in the past month. Soon after, when I regained myself, I remember hearing a swooshing sound going through my head. Can these actually be seizures? There have been a few times when I wake up clenching my tongue. As of today, my tongue is scalloped on both sides... most likely from the teeth clenching down.
This afternoon I was talking to my brother, and I was stuttering like I have never done before. One instance I was stuck on the word "so." I repeated it 4 times before I was able to spurt it out. It might be hard to imagine someone having trouble saying a word as simple as "so"... but I had a mental block, and I just couldn't say it. He was freaked because he finally understood what I was going through.
It has been almost two weeks since my sudden onset of stuttering with the occasional slurring of words. The stuttering is something that really boggles my mind. I used to be a fluent speaker, and now I feel like I have trouble putting a simple sentence together. I am not stressed at all when I stutter. I will be talking hockey with a friend, with no stuttering on my mind, and then bam! I can't talk.
I have tried reading what causes stuttering, but there are not many. I have already had the testing done to rule out most causes. I even read where stress and anxiety are not real causes of stuttering. I believe that because of two reasons: A) If stress caused stuttering, A LOT of people would be stuttering. B) I stutter when I am not stressed.. most times when I am in a very relaxed state of mind.
I should mention, on a lighter side, that it is nice having a twin. When there is something wrong with me... ie. my tongue.... I just look at his to see what it should look like.
MSNik
06-14-2009, 11:07 AM
Wow Blues...first of all, I should mention. I am a twin too- unfortunatley, my twin brother was killed ten years ago, by a drunk driver. I dont have the luxury you do, of having a twin to talk to or look at anymore!
But on a more pressing note- seizures can be part of MS...and they can be their own disorder, not related to MS. Stuttering isnt usually a part of MS, however, its very possible, that stuttering could be related, in the sense that if you are having an MS attack, depending on what part of the brain is being affected, certainly stuttering and speaking could be part of it.
Your father is right. ITs time. You need to start seeing other doctors immediately before you have a seziure which effects you in a scarier way then you are already having....imagine driving, or doing something work related, and that happening? Its lucky that you have been in bed, but what about the possiblity of next time? Please take their advice, and start investigating good doctors. Youre going to have to start with Neurologists- from there, they can better direct you.
Youre on my mind, and Im worried about you- please keep in touch.
Nikki
But on a more pressing note- seizures can be part of MS...and they can be their own disorder, not related to MS. Stuttering isnt usually a part of MS, however, its very possible, that stuttering could be related, in the sense that if you are having an MS attack, depending on what part of the brain is being affected, certainly stuttering and speaking could be part of it.
Your father is right. ITs time. You need to start seeing other doctors immediately before you have a seziure which effects you in a scarier way then you are already having....imagine driving, or doing something work related, and that happening? Its lucky that you have been in bed, but what about the possiblity of next time? Please take their advice, and start investigating good doctors. Youre going to have to start with Neurologists- from there, they can better direct you.
Youre on my mind, and Im worried about you- please keep in touch.
Nikki
MSJayhawk
06-14-2009, 08:49 PM
Can these actually be seizures? There have been a few times when I wake up clenching my tongue. As of today, my tongue is scalloped on both sides... most likely from the teeth clenching down.
This afternoon I was talking to my brother, and I was stuttering like I have never done before. One instance I was stuck on the word "so." I repeated it 4 times before I was able to spurt it out. It might be hard to imagine someone having trouble saying a word as simple as "so"... but I had a mental block, and I just couldn't say it. He was freaked because he finally understood what I was going through.
I experienced seizures for about a year. They are not currently with me, but I know they could return. As to the stuttering, when my head is fatigued or I am tired, I start stuttering or have difficulty coming up with a word.......it can be frustrating. For me, a good nap helps. When my brain is tired, I recline my power chair and I sleep until my brain is ready to go again. This has been the best thing for me. :angel:
This afternoon I was talking to my brother, and I was stuttering like I have never done before. One instance I was stuck on the word "so." I repeated it 4 times before I was able to spurt it out. It might be hard to imagine someone having trouble saying a word as simple as "so"... but I had a mental block, and I just couldn't say it. He was freaked because he finally understood what I was going through.
I experienced seizures for about a year. They are not currently with me, but I know they could return. As to the stuttering, when my head is fatigued or I am tired, I start stuttering or have difficulty coming up with a word.......it can be frustrating. For me, a good nap helps. When my brain is tired, I recline my power chair and I sleep until my brain is ready to go again. This has been the best thing for me. :angel:
blues1986
06-15-2009, 04:31 PM
Well I saw my NEW doctor today and ran down all the symptoms. It took awhile, but he understood everything that I am going through.
He found it strange that my old doctor put me on Lexapro. I mentioned that my old doctor was playing the stress card since day one. Although he said it might be stress causing all of this, he just found it hard to believe that stress could cause this much symptoms from someone who has never been stressed before.
Well, after I told him everything he said that I definitely need to see a neurologist. (Third doctor to tell me this.) I told him that I had an appointment in early August, and he shook his head saying: "that's too long." He left the room and came back with an appointment tomorrow. Doctor told me it was one of the best neurology places in WNY.
The doctor was trying to tell my father what it could be. He said MS, Parkinsons, ALS, or a host of others. The mention of ALS scares the hell out of me, but I guess we will see.
For the past few days I have had unbelievable tremors. They are in my hands and mouth area. They have been getting worse over the last 72 hours. It feels like there is motor in my arms and face that is stuck on humming. It is happening 24/7 now. Doctor first said it could be the stress, but said it shouldn't be happening all day and night. My father thinks it could be seizures... he is an EMT, so he has seen signs of this before.
I was intrigued when the doctor said MS, saying it sounds very much like it. My father then said: "But the MRI came back normal." My doctor said something along the lines that it might not be fully developed, and it might take a little longer for it to show up on an MRI. I believe someone on here already mentioned that too.
I was impressed at how quickly the ball got rolling here, and I am glad that this will finally get settled.
He found it strange that my old doctor put me on Lexapro. I mentioned that my old doctor was playing the stress card since day one. Although he said it might be stress causing all of this, he just found it hard to believe that stress could cause this much symptoms from someone who has never been stressed before.
Well, after I told him everything he said that I definitely need to see a neurologist. (Third doctor to tell me this.) I told him that I had an appointment in early August, and he shook his head saying: "that's too long." He left the room and came back with an appointment tomorrow. Doctor told me it was one of the best neurology places in WNY.
The doctor was trying to tell my father what it could be. He said MS, Parkinsons, ALS, or a host of others. The mention of ALS scares the hell out of me, but I guess we will see.
For the past few days I have had unbelievable tremors. They are in my hands and mouth area. They have been getting worse over the last 72 hours. It feels like there is motor in my arms and face that is stuck on humming. It is happening 24/7 now. Doctor first said it could be the stress, but said it shouldn't be happening all day and night. My father thinks it could be seizures... he is an EMT, so he has seen signs of this before.
I was intrigued when the doctor said MS, saying it sounds very much like it. My father then said: "But the MRI came back normal." My doctor said something along the lines that it might not be fully developed, and it might take a little longer for it to show up on an MRI. I believe someone on here already mentioned that too.
I was impressed at how quickly the ball got rolling here, and I am glad that this will finally get settled.
MSJayhawk
06-15-2009, 04:38 PM
Wow, what a blessing! A great doctor to pull strings for you!!
Try to remain calm because your doctor is just telling you the facts. ALS really scared me too when I first debated the possibility, but it was dismissed very early. My doctor at the time said that because of the seriousness of ALS, they checked it for me first. Yes, there are a myriad of possible problems, but you are certainly moving at "light speed warp factor 5 today"!! :) :angel:
Try to remain calm because your doctor is just telling you the facts. ALS really scared me too when I first debated the possibility, but it was dismissed very early. My doctor at the time said that because of the seriousness of ALS, they checked it for me first. Yes, there are a myriad of possible problems, but you are certainly moving at "light speed warp factor 5 today"!! :) :angel:
MSNik
06-15-2009, 07:19 PM
hey Blues...excellent news!!! It was me that mentioned to you that MRIs can change from day to day...and something that didnt show up last time, may very welll show up a week/month/6 months later. Be prepared, your probably going back in the tube when you see this Neurologist to see if any changes have taken place!
Also, Ive been saying over and over, you just dont seem the type to be written off with anxiety or depression disorder. Too many things medically going wrong, for this to be "all in your head", although I stick with my thought that anxiety and NOT KNOWING might be contributing to some of the symtoms.
I dont think you have ALS. I just dont. Call it a feeling, but knowing people who have been dx with it, your symptoms are more like Lyme or MS...and lets just say a prayer that this is what you are facing. MS is not the worst thing you can hear....and hearing anything at this point, will relieve some of the stress. You could even have a seizure disorder, something easily controlled with medication. So keep us posted.
Im so very glad to hear you got a good/fast referral. This is HUGE! Ill be thinking of you, let us know what you find out. Prepare yourself- your about to start the testing process, which is a pain in the butt- but absolutely necessary to find out what is going on.
Nikki
Also, Ive been saying over and over, you just dont seem the type to be written off with anxiety or depression disorder. Too many things medically going wrong, for this to be "all in your head", although I stick with my thought that anxiety and NOT KNOWING might be contributing to some of the symtoms.
I dont think you have ALS. I just dont. Call it a feeling, but knowing people who have been dx with it, your symptoms are more like Lyme or MS...and lets just say a prayer that this is what you are facing. MS is not the worst thing you can hear....and hearing anything at this point, will relieve some of the stress. You could even have a seizure disorder, something easily controlled with medication. So keep us posted.
Im so very glad to hear you got a good/fast referral. This is HUGE! Ill be thinking of you, let us know what you find out. Prepare yourself- your about to start the testing process, which is a pain in the butt- but absolutely necessary to find out what is going on.
Nikki
blues1986
06-16-2009, 04:25 PM
Just got back from the neuro... Just like the 100th time, I ran down everything that I have experienced. He had me do some cordination tests and then checked my reflexes. He then asked my father about family history... (my family has been lucky. There is absolutely nothing that runs on either sides) This puzzled the doctor some bit because he said that anxiety usually runs in the family...ok.... and it is hard to believe that out of the blue, 3 months ago, I was the first family member to suffer this much.
Well, after checking a few other things, he is pretty sure that stress and anxiety are playing a major role in this. He is bumping up medication and adding a few others.
There was one other thing that I brought up to the doctor, and something I have not even mentioned here either. Right around the time of my ear/sinus infections began, I started to see tiny red pin point dot sized blood specs on my right bicep and chest. I did a lot of research and it is nothing that I have seen online. Mine do not match any skin condition. I showed the doctor only because of the questionnaire asked if there has been any changes to your skin.
When I showed him, his reaction was: "Hmmm, I have never seen these before." That is not something you want to here from any doctor. He said we will keep an eye out on them.
From there he ordered a lot more blood work. He was awfully specific about what he wanted to check... with one being lyme.
I thought it was funny when I went to the lab to get blood drawn, the girl doing it was in shock. When she came over with the needle, she could not believe the bruises that I still have on my arms from the last batch of tests.
She was cute by the way : )
Well, after checking a few other things, he is pretty sure that stress and anxiety are playing a major role in this. He is bumping up medication and adding a few others.
There was one other thing that I brought up to the doctor, and something I have not even mentioned here either. Right around the time of my ear/sinus infections began, I started to see tiny red pin point dot sized blood specs on my right bicep and chest. I did a lot of research and it is nothing that I have seen online. Mine do not match any skin condition. I showed the doctor only because of the questionnaire asked if there has been any changes to your skin.
When I showed him, his reaction was: "Hmmm, I have never seen these before." That is not something you want to here from any doctor. He said we will keep an eye out on them.
From there he ordered a lot more blood work. He was awfully specific about what he wanted to check... with one being lyme.
I thought it was funny when I went to the lab to get blood drawn, the girl doing it was in shock. When she came over with the needle, she could not believe the bruises that I still have on my arms from the last batch of tests.
She was cute by the way : )
MSNik
06-16-2009, 04:52 PM
Well, the testing begins. Sorry to hear that the doctor is leaning towards stress and anxiety. That doesnt sound very positive, coming from a Neuro- however, did he also talk to you about repeating the MRis? Was MS mentioned and did he say anything about the possiblity?
Most Neuros are general Neurologists- they treat everything from Lyme to Migranes, Parkinsons to MS and everything in between. If you still feel that things are pointing towards MS, you NEED to find a MS doctor. They will both diagnos and rule out MS..
However, as its been mentioned 100x before, Lymes Disease does present much the same way....and if he is running blood work for that again- MAKE SURE HE IS SENDING IT TO A LYME LITERATE LAB. Ask the doctor if he is familiar with Igenex....you can look it up yourself and see why Im mentioning it. You might also check out the LYme board here on healthboards to read more on the people who have been thru what you are going thru.
I hope you get some answers soon.
Nikki
Most Neuros are general Neurologists- they treat everything from Lyme to Migranes, Parkinsons to MS and everything in between. If you still feel that things are pointing towards MS, you NEED to find a MS doctor. They will both diagnos and rule out MS..
However, as its been mentioned 100x before, Lymes Disease does present much the same way....and if he is running blood work for that again- MAKE SURE HE IS SENDING IT TO A LYME LITERATE LAB. Ask the doctor if he is familiar with Igenex....you can look it up yourself and see why Im mentioning it. You might also check out the LYme board here on healthboards to read more on the people who have been thru what you are going thru.
I hope you get some answers soon.
Nikki
MSJayhawk
06-16-2009, 05:21 PM
Stress and anxiety can be a factor BUT I personally think that much of the stress and anxiety is from the slowness of the diagnosis process. Take care and good luck tomorrow! :angel:
MSNik
06-16-2009, 05:47 PM
Blues, did I miss something? Whats tomorrow? What is the plan, actually? I went back and re-read your thread, and didnt see anything other then the blood work you had drawn today. Glad to hear she was cute, but dont forget to pick up some arnica gel- sounds like you are going to be needing it. Youre turning into a pin cushion! Well, if I missed something, about tomorrow, sorry- Im having a really nutty day.
Nikki
Nikki
blues1986
06-16-2009, 05:54 PM
Blues, did I miss something? Whats tomorrow? What is the plan, actually? I went back and re-read your thread, and didnt see anything other then the blood work you had drawn today. Glad to hear she was cute, but dont forget to pick up some arnica gel- sounds like you are going to be needing it. Youre turning into a pin cushion! Well, if I missed something, about tomorrow, sorry- Im having a really nutty day.
Nikki
Not sure where that came from. I go back in early July for results. The doctor never even mentioned MS... nor did he any other disease. He was more concerned with the timing of the infections and the way everything else fell. He mentioned something about a blood disorder. We will see from the blood tests.
Nikki
Not sure where that came from. I go back in early July for results. The doctor never even mentioned MS... nor did he any other disease. He was more concerned with the timing of the infections and the way everything else fell. He mentioned something about a blood disorder. We will see from the blood tests.
MSNik
06-16-2009, 07:30 PM
Hi Blues. Jawhawk wrote "good luck tomorrow' I thought I missed something.
Im not sure what to make of this doctor, honestly....he sounds like he is starting at the beginning, which is GOOD, but he also doesnt sound like he is leaning towards a neurological disorder....he is a Neuro? Or is he a general physician? You really need to see a good Neuro.
Keep us posted.....
nikki
Im not sure what to make of this doctor, honestly....he sounds like he is starting at the beginning, which is GOOD, but he also doesnt sound like he is leaning towards a neurological disorder....he is a Neuro? Or is he a general physician? You really need to see a good Neuro.
Keep us posted.....
nikki
blues1986
06-16-2009, 07:37 PM
Hi Blues. Jawhawk wrote "good luck tomorrow' I thought I missed something.
Im not sure what to make of this doctor, honestly....he sounds like he is starting at the beginning, which is GOOD, but he also doesnt sound like he is leaning towards a neurological disorder....he is a Neuro? Or is he a general physician? You really need to see a good Neuro.
Keep us posted.....
nikki
He is a neruo. I went to a great clinc in WNY.
Im not sure what to make of this doctor, honestly....he sounds like he is starting at the beginning, which is GOOD, but he also doesnt sound like he is leaning towards a neurological disorder....he is a Neuro? Or is he a general physician? You really need to see a good Neuro.
Keep us posted.....
nikki
He is a neruo. I went to a great clinc in WNY.
MSNik
06-16-2009, 07:47 PM
Good, glad to hear it. Then, he is starting from the beginning and ruling out the obvious...deficiencies, hormones, maybe even infection....its as good a place to start as any! Cant wait to hear if your blood work shows anything, but please, ask him about Igenex.....its the best lab for Lyme work. And, any doc, from anywhere, can send your blood work there.
blues1986
06-16-2009, 10:52 PM
Good, glad to hear it. Then, he is starting from the beginning and ruling out the obvious...deficiencies, hormones, maybe even infection....its as good a place to start as any! Cant wait to hear if your blood work shows anything, but please, ask him about Igenex.....its the best lab for Lyme work. And, any doc, from anywhere, can send your blood work there.
As far as I could tell looking at the blood work up chart, he was checking a lot. I had 5 tubes of blood drawn, so that tells me they needed a lot of blood for checking. I will ask him about Ignex when I see him.
Gotta say that since I began taking more medication for the anxiety, my hand shaking has subsided quite a bit.
As far as I could tell looking at the blood work up chart, he was checking a lot. I had 5 tubes of blood drawn, so that tells me they needed a lot of blood for checking. I will ask him about Ignex when I see him.
Gotta say that since I began taking more medication for the anxiety, my hand shaking has subsided quite a bit.
blues1986
06-18-2009, 06:56 PM
Well this afternoon my father answered the phone and said: "Hello.... no this is his father....ok......ok......what would cause that?........can we re-check that?"
My first thought was something showed up on the blood tests. I read a sign at the clinic that said the doctors would not call unless something showed up in your tests.
Well, according to the blood tests, I am just getting over mononucleosis. This explains all those infections that I went through for the entire span of April/May.
He also said that my red blood count is "high." He said this could be caused by dehydration. I find this hard to believe since I have been drinking water like there's no tomorrow. I am going to get that rechecked during my next appointment.
So.... is mono at all related to MS? Probably not, but the doctor yesterday said it was strange that these infections came days within everything else, so who knows.
The tests will go on.
My first thought was something showed up on the blood tests. I read a sign at the clinic that said the doctors would not call unless something showed up in your tests.
Well, according to the blood tests, I am just getting over mononucleosis. This explains all those infections that I went through for the entire span of April/May.
He also said that my red blood count is "high." He said this could be caused by dehydration. I find this hard to believe since I have been drinking water like there's no tomorrow. I am going to get that rechecked during my next appointment.
So.... is mono at all related to MS? Probably not, but the doctor yesterday said it was strange that these infections came days within everything else, so who knows.
The tests will go on.
MSNik
06-18-2009, 08:35 PM
blues, you are having quite a time with this, arent you?
First of all, your doctors office broke the law. No matter if it was your father, and you trust him- you are over 18 and they are not allowed to talk to anyone about your test results except you. Unless you signed a paper giving them permission to give your father test results? Thats unusul, but possible. In this day and age, with HIPPA regulations, anyone over 18 isnt supposed to have anyone else get any results...
But now you are "getting over Mono". (hope she was worth it!:D) Heres what youre about to find out....there is some serious studies going on, which say that both Mono and Chronic Fatigue Syndrome (used to be called the Yuppie syndrom) - which are both caused by the same virus- do actually have something to do with MS. Its not "PROVEN" as of yet, but there are some really good indicators that people who have had Mono or CFS are more likely to develope MS .....if you search on healthboards the words MS and Mono, youll find allot of posts on it. Not too long ago, we had many questions on this. They think that the virus attacks certain parts of the immune system, weakening it and effecting the nervous system....the specifics of which Im not clear on.
I myself, never had Mono, nor have several of my friends with MS....however, I also know hundreds of people who DID have Mono as a child, or in their 20s who did go on to be dx with MS later on......how long does it take to be dx? No one knows....it can take months or years....if its there, it will show itself eventualy.
I dont want to scare you- theres really nothing to be scared of. But, this certainly explains how tired you have been...it doesnt explain the seizures or the mind fuzzies you experienced though. And, with mono, Im surprised you didnt develope a fever or something more significant, like a sore throat something that would have taken you to the doctors...and if you DID go to the doctors for something minor, they should have done a blood test and picked it up immediately.
Red blood count can be from numerous things.....dehydration is one of them but not likely if you are drinking so much...have it rechecked. Chances are, it will come back normal.
Interesting that they are teling your dad all this....can you imagine if it had been a STD they found, or something that you didnt need to disclose with your family? How embarrassing! You might want to question why that info was given out.....and I do know that you are very close to your dad and your brother, but still.....its a law, and they should be abiding by it.
Go look up MS and Mono, youll see all sorts of things.
Hugs
Nikki
First of all, your doctors office broke the law. No matter if it was your father, and you trust him- you are over 18 and they are not allowed to talk to anyone about your test results except you. Unless you signed a paper giving them permission to give your father test results? Thats unusul, but possible. In this day and age, with HIPPA regulations, anyone over 18 isnt supposed to have anyone else get any results...
But now you are "getting over Mono". (hope she was worth it!:D) Heres what youre about to find out....there is some serious studies going on, which say that both Mono and Chronic Fatigue Syndrome (used to be called the Yuppie syndrom) - which are both caused by the same virus- do actually have something to do with MS. Its not "PROVEN" as of yet, but there are some really good indicators that people who have had Mono or CFS are more likely to develope MS .....if you search on healthboards the words MS and Mono, youll find allot of posts on it. Not too long ago, we had many questions on this. They think that the virus attacks certain parts of the immune system, weakening it and effecting the nervous system....the specifics of which Im not clear on.
I myself, never had Mono, nor have several of my friends with MS....however, I also know hundreds of people who DID have Mono as a child, or in their 20s who did go on to be dx with MS later on......how long does it take to be dx? No one knows....it can take months or years....if its there, it will show itself eventualy.
I dont want to scare you- theres really nothing to be scared of. But, this certainly explains how tired you have been...it doesnt explain the seizures or the mind fuzzies you experienced though. And, with mono, Im surprised you didnt develope a fever or something more significant, like a sore throat something that would have taken you to the doctors...and if you DID go to the doctors for something minor, they should have done a blood test and picked it up immediately.
Red blood count can be from numerous things.....dehydration is one of them but not likely if you are drinking so much...have it rechecked. Chances are, it will come back normal.
Interesting that they are teling your dad all this....can you imagine if it had been a STD they found, or something that you didnt need to disclose with your family? How embarrassing! You might want to question why that info was given out.....and I do know that you are very close to your dad and your brother, but still.....its a law, and they should be abiding by it.
Go look up MS and Mono, youll see all sorts of things.
Hugs
Nikki
blues1986
06-18-2009, 10:02 PM
If I remember correctly, I was signing papers left and right the day I was at the clinic. I remember putting my fathers name on everything.
It does not bother me that my father knows whats going on... that's why I brought him along. He seemed to know what questions to ask anyways. My mother is a nurse, and my father is an EMT, you can't get any more help than that :)
About mono. I have had 2 other standard blood tests done over the past few weeks. How come mono was not found during those tests? Is mono something that is not detected during a standard blood test?
I should add that during these infections, I had several sore throats come and go. For me, they didn't stick out because I also had acid reflux, so I just assumed the sore throat was being caused by that.
Now that I think of it, this isn't the first time I noticed that I have had a high red blood count. When I was waiting to get my MRI, the nurse gave me my medical charts. I was glancing through them, and found my blood test results. I think the red blood count was "elevated." It was not within the normal range. While I am not 100% on this, it would tell me that multiple tests are showing abnormal red blood counts. I am positive this is not being caused by dehydration. I am going to do some research on this.
It does not bother me that my father knows whats going on... that's why I brought him along. He seemed to know what questions to ask anyways. My mother is a nurse, and my father is an EMT, you can't get any more help than that :)
About mono. I have had 2 other standard blood tests done over the past few weeks. How come mono was not found during those tests? Is mono something that is not detected during a standard blood test?
I should add that during these infections, I had several sore throats come and go. For me, they didn't stick out because I also had acid reflux, so I just assumed the sore throat was being caused by that.
Now that I think of it, this isn't the first time I noticed that I have had a high red blood count. When I was waiting to get my MRI, the nurse gave me my medical charts. I was glancing through them, and found my blood test results. I think the red blood count was "elevated." It was not within the normal range. While I am not 100% on this, it would tell me that multiple tests are showing abnormal red blood counts. I am positive this is not being caused by dehydration. I am going to do some research on this.
MSNik
06-19-2009, 08:44 AM
The mono test is a specific test, which normally is given to rule out Mono, but if no one was looking for it, they might not have ordered it; although in your age group, and with your history of symtoms, only a very overworked doctor would have skipped that common blood test.
Elevated RBC can be from allot of things: yes to dehydration, but also from smoking, COPD, heart disease and heart failure, pulmonary fibrosis, the list goes on and on....and of course, it could have been a messed up test. Having it rechecked with clarify.
when you can, start that file I told you about. Everytime you get blood work drawn, the lab sends a report either to you, your doctor or both. This is the stufff that you want to keep handy to refer to- and its easy to get a copy of the report, by asking. You can ask, at the lab when its drawn to have a copy sent to you, usually they will do so, but you can definaetely ask the doctors office who ordered it for a copy of the results. I know, you were in PA when you got it done...call them up and ask them to send you a copy of everything they did while you were there in the past year- have it sent to your dads house. If that doesnt work, have it sent to the new doctor in WNY.
Its cool if you had signed something to have your father get results, but its still questionable, due to your age. I know you have nothing to hide from your dad , and at this point, can use all the help you can get- but there are situations where an office leaving a message like that can really screw a person up. Good thing your dad is an EMT, and he "gets it".
I have 250 EMTs working for me, along with over 500 nurses. I spend my days wining and dining doctors and surgeons...its what I do- and you know what? My ex is a surgeon...my mother and father both pharmacists- and it still doesnt matter. When it comes to my health and my insurance and my answers- IM my best advocate! Youll learn to be, too. Youre going to have to be. There is no easy way to deal with the American System except to stay on top of it constantly.
Have a good day Blues.
Nikki
Elevated RBC can be from allot of things: yes to dehydration, but also from smoking, COPD, heart disease and heart failure, pulmonary fibrosis, the list goes on and on....and of course, it could have been a messed up test. Having it rechecked with clarify.
when you can, start that file I told you about. Everytime you get blood work drawn, the lab sends a report either to you, your doctor or both. This is the stufff that you want to keep handy to refer to- and its easy to get a copy of the report, by asking. You can ask, at the lab when its drawn to have a copy sent to you, usually they will do so, but you can definaetely ask the doctors office who ordered it for a copy of the results. I know, you were in PA when you got it done...call them up and ask them to send you a copy of everything they did while you were there in the past year- have it sent to your dads house. If that doesnt work, have it sent to the new doctor in WNY.
Its cool if you had signed something to have your father get results, but its still questionable, due to your age. I know you have nothing to hide from your dad , and at this point, can use all the help you can get- but there are situations where an office leaving a message like that can really screw a person up. Good thing your dad is an EMT, and he "gets it".
I have 250 EMTs working for me, along with over 500 nurses. I spend my days wining and dining doctors and surgeons...its what I do- and you know what? My ex is a surgeon...my mother and father both pharmacists- and it still doesnt matter. When it comes to my health and my insurance and my answers- IM my best advocate! Youll learn to be, too. Youre going to have to be. There is no easy way to deal with the American System except to stay on top of it constantly.
Have a good day Blues.
Nikki
blues1986
06-19-2009, 11:56 AM
This morning there was a message on the answering machine saying that since there were some "abnormalities" with my blood tests, I need to come back next week for more tests. I am wondering if this was because of the RBC?
MSNik
06-19-2009, 02:03 PM
Probably, but like I said, you should be getting a copy of these test results. Then, you can see exactly where you are. The lab will show what is normal, what is high, or low, and what Normal is for each test...
Having a copy will leave you with more answers then questions....
RBC being high is something that might have just spiked once- I wouldnt go crazy worrying about it unless it comes back abnormal again, in which case, they will want further testing.
Let us know....and pick up that Arnica for the bruising~!! Youre going to need it!
Nikki
Having a copy will leave you with more answers then questions....
RBC being high is something that might have just spiked once- I wouldnt go crazy worrying about it unless it comes back abnormal again, in which case, they will want further testing.
Let us know....and pick up that Arnica for the bruising~!! Youre going to need it!
Nikki
blues1986
06-20-2009, 10:57 PM
Probably, but like I said, you should be getting a copy of these test results. Then, you can see exactly where you are. The lab will show what is normal, what is high, or low, and what Normal is for each test...
Having a copy will leave you with more answers then questions....
RBC being high is something that might have just spiked once- I wouldnt go crazy worrying about it unless it comes back abnormal again, in which case, they will want further testing.
Let us know....and pick up that Arnica for the bruising~!! Youre going to need it!
Nikki
Is it common to bruise when you have blood drawn? It seems like when I have a blood test, I bruise. These are not tiny little bruises, these are LARGE bruises that cover a decent sized area. Not to complain about more symptoms, but the doctor did observe a few bruises on my legs which I told him were coming and going over the last few weeks. This, in addition to the blood specs on my arm, was one reason he mentioned a possible blood disorder.
After this is all done and over, I think I need to write a book. This would be one hell of a read, from the first symptom back in January, to today with everything else.
One final thought tonight, I was told I should be receiving a "script" in the mail Monday. I am assuming this means a prescription? As for what, I have no idea. I tried calling the neuro clinic for further details about it, but I guess I must of missed the doc.
Having a copy will leave you with more answers then questions....
RBC being high is something that might have just spiked once- I wouldnt go crazy worrying about it unless it comes back abnormal again, in which case, they will want further testing.
Let us know....and pick up that Arnica for the bruising~!! Youre going to need it!
Nikki
Is it common to bruise when you have blood drawn? It seems like when I have a blood test, I bruise. These are not tiny little bruises, these are LARGE bruises that cover a decent sized area. Not to complain about more symptoms, but the doctor did observe a few bruises on my legs which I told him were coming and going over the last few weeks. This, in addition to the blood specs on my arm, was one reason he mentioned a possible blood disorder.
After this is all done and over, I think I need to write a book. This would be one hell of a read, from the first symptom back in January, to today with everything else.
One final thought tonight, I was told I should be receiving a "script" in the mail Monday. I am assuming this means a prescription? As for what, I have no idea. I tried calling the neuro clinic for further details about it, but I guess I must of missed the doc.
MSNik
06-21-2009, 11:17 AM
Bruising when you get blood drawn is not uncommon; but is usually a result of not being hydrated enough. You need to make sure you slam down a huge bottle of water an hour before the blood work, when you can. And, im telling you, Arnica massaged into the area every few hours will take away the bruising within a day.
A script, is a prescription; more then likely they want to send you a script to take to the lab, to get more blood work done. Do you have LabCorp or Quest near you, where they will do it? IF so, when you go there, ASK THEM TO SEND YOU A COPY OF THE RESULTS. That is your right, and usually they will do it. Unless, he was giving you a prescription for a drug?? YOU hadnt mentioned anything like that- but its possible.
Hang in there and let us know what happens.
Nikki
A script, is a prescription; more then likely they want to send you a script to take to the lab, to get more blood work done. Do you have LabCorp or Quest near you, where they will do it? IF so, when you go there, ASK THEM TO SEND YOU A COPY OF THE RESULTS. That is your right, and usually they will do it. Unless, he was giving you a prescription for a drug?? YOU hadnt mentioned anything like that- but its possible.
Hang in there and let us know what happens.
Nikki