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Old 06-09-2009, 01:38 PM   #1
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Could this be MS?

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.

Last edited by blues1986; 06-09-2009 at 05:52 PM.

 
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Old 06-09-2009, 01:49 PM   #2
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Re: Could this be MS?

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.

 
Old 06-09-2009, 02:15 PM   #3
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Re: Could this be MS?

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!

 
Old 06-09-2009, 03:17 PM   #4
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Re: Could this be MS?

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
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Old 06-09-2009, 05:46 PM   #5
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Re: Could this be MS?

Quote:
Originally Posted by MSNik View Post
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.

 
Old 06-09-2009, 05:59 PM   #6
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Re: Could this be MS?

Quote:
Originally Posted by blues1986 View Post
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.
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Old 06-09-2009, 06:20 PM   #7
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Re: Could this be MS?

Quote:
Originally Posted by MSJayhawk View Post
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.

 
Old 06-09-2009, 08:01 PM   #8
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Re: Could this be MS?

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.)
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Old 06-10-2009, 02:51 PM   #9
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Re: Could this be MS?

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
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Old 06-10-2009, 05:46 PM   #10
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Re: Could this be MS?

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.

 
Old 06-10-2009, 06:32 PM   #11
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Re: Could this be MS?

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? !

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
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Old 06-10-2009, 07:06 PM   #12
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Re: Could this be MS?

Quote:
Originally Posted by MSNik View Post
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? !

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.

 
Old 06-11-2009, 02:33 PM   #13
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Re: Could this be MS?

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
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Old 06-11-2009, 04:17 PM   #14
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Re: Could this be MS?

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?

 
Old 06-11-2009, 07:09 PM   #15
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Re: Could this be MS?

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
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