ellekay
09-05-2008, 07:57 AM
I hope someone out there can help.
I recently became much more aware of my symptoms when i realised that ive been getting pins and needles for yrs and yrs, numbness and more recently twitches in all my muscles. Ive also been experiencing eye pain, and blurred vision, muscle weakness and CONSTANT urinary tract infections which are killing me. I am seeing a specialist in November and unfortunity there is no earlier appt.
After reading about MS, it seems i have all the symptoms that come with it, but my question to all the sufferes out there is...
how horrible of a disease is it? and more importantly, does it cause perminant paralasis?
I am 28 yrs old and im begginning to feel a little anxious.
Should i get an appt with my doc ASAP before my symptoms worsen?
Please help me i feel so alone and scared.
Elle
I recently became much more aware of my symptoms when i realised that ive been getting pins and needles for yrs and yrs, numbness and more recently twitches in all my muscles. Ive also been experiencing eye pain, and blurred vision, muscle weakness and CONSTANT urinary tract infections which are killing me. I am seeing a specialist in November and unfortunity there is no earlier appt.
After reading about MS, it seems i have all the symptoms that come with it, but my question to all the sufferes out there is...
how horrible of a disease is it? and more importantly, does it cause perminant paralasis?
I am 28 yrs old and im begginning to feel a little anxious.
Should i get an appt with my doc ASAP before my symptoms worsen?
Please help me i feel so alone and scared.
Elle
Sponsor
Snoopy61
09-05-2008, 08:36 AM
Elle, I have had MS diagnosed for 22 years and I am not in a wheelchair. Not everyone with this disease will end up in a wheelchair - that is a myth.
Waiting to see a neuro until Nov. will not make a difference. Many with MS have had this disease years before it was ever diagnosed. For myself, I have had symptoms since before my teens. I was diagnosed ar 25.
This disease can range from being an inconvience to very debilitating to everything in between. Multiple Sclerosis is a very individualied disease.
Try to relax and wait for your appointment in Nov. As it is, testing can take quite some time and MS is not always diagnosed. There are numerous conditions that can cause the symptoms your having.
Waiting to see a neuro until Nov. will not make a difference. Many with MS have had this disease years before it was ever diagnosed. For myself, I have had symptoms since before my teens. I was diagnosed ar 25.
This disease can range from being an inconvience to very debilitating to everything in between. Multiple Sclerosis is a very individualied disease.
Try to relax and wait for your appointment in Nov. As it is, testing can take quite some time and MS is not always diagnosed. There are numerous conditions that can cause the symptoms your having.
Delilah008
09-05-2008, 08:45 AM
MS certainly isn't a happy diagnosis but it isn't a wheelchair sentence either. The disease progresses so differently from person to person that it would be impossible to predict whether you (or anyone else) will ever have severe permanent disability issues over the course of their lifetime.
A lot of the prognosis doctors make is based on the kind of MS one have. Relapsing-remitting is the most common diagnosis and indicates that there is relief in symptoms and a return (for the most part) to the same abilities as were present prior to the exacerbation.
Many people on this board have been living with MS for decades and are still able to move about just fine in their daily lives.
Seeing a neuro any sooner will not really make a difference. MS symptoms progress in their own time. Unless you're currently in an exacerbation (sudden, severe worsening of symptoms), there's really nothing a neuro can do. Even the treatment for exacerbations (usually steroids) is not a guarantee that they will go away any faster.
Telling you to relax makes sense, but I know how devastating it can be waiting to find out about something like this. Deal with each day as it comes, live life, and wait for the appointment as just another thing that needs to be done. Can't live our lives waiting around for the worst to happen, can we?
A lot of the prognosis doctors make is based on the kind of MS one have. Relapsing-remitting is the most common diagnosis and indicates that there is relief in symptoms and a return (for the most part) to the same abilities as were present prior to the exacerbation.
Many people on this board have been living with MS for decades and are still able to move about just fine in their daily lives.
Seeing a neuro any sooner will not really make a difference. MS symptoms progress in their own time. Unless you're currently in an exacerbation (sudden, severe worsening of symptoms), there's really nothing a neuro can do. Even the treatment for exacerbations (usually steroids) is not a guarantee that they will go away any faster.
Telling you to relax makes sense, but I know how devastating it can be waiting to find out about something like this. Deal with each day as it comes, live life, and wait for the appointment as just another thing that needs to be done. Can't live our lives waiting around for the worst to happen, can we?
Bearygood
09-05-2008, 08:59 AM
Hi, Elle. It absolutely is scary to hear the words "Multiple Sclerosis". Many of us were in the same boat! But as you learn more about it, it will become less scary. The great majority of MSers are still ambulatory after many years of diagnosis and many who are not still lead very productive and full lives.
As Snoopy said, although this is not the case for everyone, many have symptoms for a long time before they are diagnosed. I just want to add something about your eye. There are a few eye conditions associated with MS, one very closely. While you can wait to see a neurologist, you should NOT wait to see an ophthalmologist. This is regardless of whether it's one of these eye conditions or not or how you answer the questions below. Bottom line is, don't mess around with your vision. Make an appointment with an eye doctor (an MD, not an optician) now.
- Is it one eye or both?
- Where is the pain?
- Is it worse with movement?
- If you pick up something brightly colored and look at it out of one eye at a time do you see a difference?
As Snoopy said, although this is not the case for everyone, many have symptoms for a long time before they are diagnosed. I just want to add something about your eye. There are a few eye conditions associated with MS, one very closely. While you can wait to see a neurologist, you should NOT wait to see an ophthalmologist. This is regardless of whether it's one of these eye conditions or not or how you answer the questions below. Bottom line is, don't mess around with your vision. Make an appointment with an eye doctor (an MD, not an optician) now.
- Is it one eye or both?
- Where is the pain?
- Is it worse with movement?
- If you pick up something brightly colored and look at it out of one eye at a time do you see a difference?
duttin
09-05-2008, 11:42 AM
You Ha Ve Gotten Wonderful Advice Here.
Please Get The Eyes Checked, Visual Distortions, Blurred Vision, Eye Pain Should Never Be Over Looked Nor Ever Ignored.
This Is One Appointment That Should Have Been Made Immediatly At The On Set Of Symptoms.this Is Honesty The First Starting Point.
Please, Please Make That Eye Appointment.
Also With The Increase Of Noticable Symptoms, Your Family Doctor Can Start Getting Test Ordered, The Mri's With And Without Contrast Will Aide In A Neurologist Reveiwing Them.
A Emg/ncs Is A Big Test Used To Help Identify The Source Of The Numbness And Tingling.
These Test Are Standard And Can Be Done Before Seeing A Neuro.
Ms Has Many Mimicers And Many Drs Will Try To Rule Them Out First.
I Was First Dx'd With Ms In 1998 After A Tramatic Back Surgery,i Was 32 And Disregarded The Dx,as Being Young And After A Surgery Of This Nature I Went On Doing Well Contributing Symptoms To The Surgery And Being A Mother Of 4 Active Children, I Was Relatively Symptom Free For The Most Part Until September Of 2004 And Then Again I Basically Thought The Back Was Flairing Up,after Many Test And So Forth I Was Rediagnosed In January Of 2007.
This An Individualized Disease And Effects Each Of Us Differently,i Have Recently Been Diagnosed With A Spinal Nerve Disease Relating To The Past Surgeries And Between The 2 They Play There Havoc.
I Have A Wheel Chair,very Reluctant To Get It,but Its Here If I Do Indeed Need It.
But Its A Combination Of Both Diseases And Between The Both ,my Abilities Of Walking Distances Has Been Limited,but When I Do Need It,it's Here.
The Words Ms Are Very Scary And Many When They First Hear These Words They Do The Web Searching And Much Information In Cyber Space Is And Can Be Misleading.
Try To Relax And Realize That If This Is Indeed Ms,it's Livable And This Is A Fantastic Group Here To Help You Through The Process.
The Testing Can Be An Emotional Rollercoaster,we Are Here To Help You Through It All.
Please Get The Eyes Checked, Visual Distortions, Blurred Vision, Eye Pain Should Never Be Over Looked Nor Ever Ignored.
This Is One Appointment That Should Have Been Made Immediatly At The On Set Of Symptoms.this Is Honesty The First Starting Point.
Please, Please Make That Eye Appointment.
Also With The Increase Of Noticable Symptoms, Your Family Doctor Can Start Getting Test Ordered, The Mri's With And Without Contrast Will Aide In A Neurologist Reveiwing Them.
A Emg/ncs Is A Big Test Used To Help Identify The Source Of The Numbness And Tingling.
These Test Are Standard And Can Be Done Before Seeing A Neuro.
Ms Has Many Mimicers And Many Drs Will Try To Rule Them Out First.
I Was First Dx'd With Ms In 1998 After A Tramatic Back Surgery,i Was 32 And Disregarded The Dx,as Being Young And After A Surgery Of This Nature I Went On Doing Well Contributing Symptoms To The Surgery And Being A Mother Of 4 Active Children, I Was Relatively Symptom Free For The Most Part Until September Of 2004 And Then Again I Basically Thought The Back Was Flairing Up,after Many Test And So Forth I Was Rediagnosed In January Of 2007.
This An Individualized Disease And Effects Each Of Us Differently,i Have Recently Been Diagnosed With A Spinal Nerve Disease Relating To The Past Surgeries And Between The 2 They Play There Havoc.
I Have A Wheel Chair,very Reluctant To Get It,but Its Here If I Do Indeed Need It.
But Its A Combination Of Both Diseases And Between The Both ,my Abilities Of Walking Distances Has Been Limited,but When I Do Need It,it's Here.
The Words Ms Are Very Scary And Many When They First Hear These Words They Do The Web Searching And Much Information In Cyber Space Is And Can Be Misleading.
Try To Relax And Realize That If This Is Indeed Ms,it's Livable And This Is A Fantastic Group Here To Help You Through The Process.
The Testing Can Be An Emotional Rollercoaster,we Are Here To Help You Through It All.
MSJayhawk
09-05-2008, 02:36 PM
I spent 1982-2002 free of a wheelchair. Since 2002, I started using a power chair. A manual chair was not an option for me due to physical fatigue.
You might go your entire life without the need of a chair. MS does not offer any promise nor any decided ending. You are a unique creation and your body will battle your disease differently than mine.
When I first looked-up MS in the encyclopedia in 1982 (eons and eons ago ;) ), I was worried like you. My neurologist was able to lead me in the opposite direction. He told me that MS was something I could live with without meds if I avoided stress and determined my triggers. Once I had these tools, I went forward without worries. Since 2002 my MS worsened, but I still live life as fully as I can.
Just remember, you are uniquely created and your life does not have to be lived within the encyclopedic version of MS. Should you see your doctor? Yes. If you do not have MS, your problems may be a treatable problem. I will keep you in my prayers.
Lastly, MS will be a monster if you allow it to be a monster. I lock my MS in a "closet" and live my life one day at a time.
You might go your entire life without the need of a chair. MS does not offer any promise nor any decided ending. You are a unique creation and your body will battle your disease differently than mine.
When I first looked-up MS in the encyclopedia in 1982 (eons and eons ago ;) ), I was worried like you. My neurologist was able to lead me in the opposite direction. He told me that MS was something I could live with without meds if I avoided stress and determined my triggers. Once I had these tools, I went forward without worries. Since 2002 my MS worsened, but I still live life as fully as I can.
Just remember, you are uniquely created and your life does not have to be lived within the encyclopedic version of MS. Should you see your doctor? Yes. If you do not have MS, your problems may be a treatable problem. I will keep you in my prayers.
Lastly, MS will be a monster if you allow it to be a monster. I lock my MS in a "closet" and live my life one day at a time.
ellekay
09-05-2008, 09:38 PM
Thank you Jayhawk for you insight and reply.
I guess my main concern was permanent paralysis or MS taking over my whole life. If i am diagnosed then i will try to fight that.
I have all of the textbook symptoms so infact, i will shocked if i DONT have MS.
I do have a question for you though, do you or did you find your symptoms worsening during that time of month? Fatigue? Sore arms and legs etc....
And do you recommend i see a doc right away seeing as though the only appt available is Novemeber at this stage?
I dont want my condition to be worse than MS. I am so very tired and sick all the time. Is that normal?
Elle.
I guess my main concern was permanent paralysis or MS taking over my whole life. If i am diagnosed then i will try to fight that.
I have all of the textbook symptoms so infact, i will shocked if i DONT have MS.
I do have a question for you though, do you or did you find your symptoms worsening during that time of month? Fatigue? Sore arms and legs etc....
And do you recommend i see a doc right away seeing as though the only appt available is Novemeber at this stage?
I dont want my condition to be worse than MS. I am so very tired and sick all the time. Is that normal?
Elle.
MSNik
09-05-2008, 10:54 PM
ellekay, you are panicking, and there is no need to panic. I do understand, its horribly scary to think of having MS, but over 400,000 people in this country have it and you would never know it! Because the disease is being studied so much right now, things are happening in a good way for us...new drugs, new chances at slowing down any progression- all sorts of positive things.I hate to say it, but if ever there was a time to get MS, now is it.
You need to see a doctor, however November is not that far away..a few weeks/ months is not going to make a difference. Some docs feel that you should be on DMDs (disease modifying drugs) as soon as possible, to prevent further attacks, lesions or symtoms....however, the drugs do not help anything that has already happened. I woke up one day with a numb tingley hand and thought I slept on it funny....one thing led to antoher and boom. MS dx within the month. 2 years later, still have no use of that hand or fingers...and Ive had optical neuritis, and some other wiggy symtoms, alot of fatigue, etc...but im still working, still driving a car, taking care of my family and acting normally. You just learn to pace yourself better. Its very important to listen to your body, avoid things that stress you out as much as possible and of course eat right, exercise and take supplements.
So is it normal to feel like you are describing...anxiety and stress, both of which you are facing in spades- will do it to you, MS will do it to you as well. No one knows what is going to happpen and as Jayhawk states, we are all created differently. If I told you I had more then 50 lesions on my brain AND black holes where the old lesions are deteriorating, Youd never know. I have a 4.0 GPA, am starting my doctorate (i think) in January and exercise regularly. No one I work with knows I have MS...but thats another story for another time.
Hang in there...it takes most people months to get a dx- read up on the Mcdonald Criteria..thats the usual necessary criteria to obtain a dx...and in the meantime, you can have a regular doc order a MRI of brain / spine WITH and WITHOUT contrast..you could have it done and ready to take to the MS specialist..
hugs
Nikki
You need to see a doctor, however November is not that far away..a few weeks/ months is not going to make a difference. Some docs feel that you should be on DMDs (disease modifying drugs) as soon as possible, to prevent further attacks, lesions or symtoms....however, the drugs do not help anything that has already happened. I woke up one day with a numb tingley hand and thought I slept on it funny....one thing led to antoher and boom. MS dx within the month. 2 years later, still have no use of that hand or fingers...and Ive had optical neuritis, and some other wiggy symtoms, alot of fatigue, etc...but im still working, still driving a car, taking care of my family and acting normally. You just learn to pace yourself better. Its very important to listen to your body, avoid things that stress you out as much as possible and of course eat right, exercise and take supplements.
So is it normal to feel like you are describing...anxiety and stress, both of which you are facing in spades- will do it to you, MS will do it to you as well. No one knows what is going to happpen and as Jayhawk states, we are all created differently. If I told you I had more then 50 lesions on my brain AND black holes where the old lesions are deteriorating, Youd never know. I have a 4.0 GPA, am starting my doctorate (i think) in January and exercise regularly. No one I work with knows I have MS...but thats another story for another time.
Hang in there...it takes most people months to get a dx- read up on the Mcdonald Criteria..thats the usual necessary criteria to obtain a dx...and in the meantime, you can have a regular doc order a MRI of brain / spine WITH and WITHOUT contrast..you could have it done and ready to take to the MS specialist..
hugs
Nikki
ellekay
09-05-2008, 11:09 PM
Wow thank you all so much!
Its amazing how much better one can feel when hearing about other peoples experiences, so i thank you greatly.
As for the pain and blurring in my eye....
Well i have noticed that every few months, my right eye begins to hurt to a point where i cannot blink ( no distorted vision associated ) this comes and goes every few months, so i went to see an optomitrist and he ran a number of tests on me and found nothing wrong with my eye. Which surprised me greatly.
Its only now that i am beggining to get the distorted vision ( no pain this time ) the other day i woke up from a nap and my right eye was completly blurry. This went away in around 10 mins.
Im just finding the MS symptoms flarring up more so in the past month than ever. The numbess and muscle spasim has become a normal part of my everyday living. I dont give it a second thought anymore, but MS was never something that i thought i would be tested for. Never.
I am only 28 and already cant walk long distances and my limbs are beginning to tire. Getting up to go to work in the morning has been an absolute nightmare ladies. Im not sure i can keep doing it. Not sure whats wrong with me.
Next week i have an internal examanation to test why i am getting chronic UTI with no relief from anti biotics.
Its amazing how much better one can feel when hearing about other peoples experiences, so i thank you greatly.
As for the pain and blurring in my eye....
Well i have noticed that every few months, my right eye begins to hurt to a point where i cannot blink ( no distorted vision associated ) this comes and goes every few months, so i went to see an optomitrist and he ran a number of tests on me and found nothing wrong with my eye. Which surprised me greatly.
Its only now that i am beggining to get the distorted vision ( no pain this time ) the other day i woke up from a nap and my right eye was completly blurry. This went away in around 10 mins.
Im just finding the MS symptoms flarring up more so in the past month than ever. The numbess and muscle spasim has become a normal part of my everyday living. I dont give it a second thought anymore, but MS was never something that i thought i would be tested for. Never.
I am only 28 and already cant walk long distances and my limbs are beginning to tire. Getting up to go to work in the morning has been an absolute nightmare ladies. Im not sure i can keep doing it. Not sure whats wrong with me.
Next week i have an internal examanation to test why i am getting chronic UTI with no relief from anti biotics.
Nenu
09-06-2008, 12:50 AM
Hey hun, most of my symptoms are sensory. I do experience a lot of pain some days in the form of what feels like headache or burning pain through my head/cheeks and my mouth.
HOWEVER, with that said, today I woke up after a good night's sleep (3 nights in a row, woohoo!) and I felt like a person that was not living with MS at all today. I felt "normal". Pain free! Now as night comes, the burning is coming in a bit, but I've found a medication that helps in my particular situation.
Don't fret over the future. Find out what works for you today. Having MS does not mean you'll necessarily have mobility issues. I know of many people much older than myself who have lived with MS for years, and still get around just fine.
Keep up the positivity! :)
HOWEVER, with that said, today I woke up after a good night's sleep (3 nights in a row, woohoo!) and I felt like a person that was not living with MS at all today. I felt "normal". Pain free! Now as night comes, the burning is coming in a bit, but I've found a medication that helps in my particular situation.
Don't fret over the future. Find out what works for you today. Having MS does not mean you'll necessarily have mobility issues. I know of many people much older than myself who have lived with MS for years, and still get around just fine.
Keep up the positivity! :)
ellekay
09-06-2008, 01:12 AM
Thanks Nenu. I am worried however of getting the run around and have them tell me its not MS or anything when there's clearly something wrong.
What if the MRI comes out clear? What then?
And my GP has req a blood test to check for my muscles, will that help?
What if the MRI comes out clear? What then?
And my GP has req a blood test to check for my muscles, will that help?
Nenu
09-06-2008, 01:22 AM
Thanks Nenu. I am worried however of getting the run around and have them tell me its not MS or anything when there's clearly something wrong.
What if the MRI comes out clear? What then?
And my GP has req a blood test to check for my muscles, will that help?
I got the run around, got pushed out of neuro #1's office, and went on to neuro #2 with a definite diagnosis of MS. It's not an easy disease to diagnose in some cases :).
Don't worry about the run around, but be clear that your MRI is of all areas that can be affected by MS (this includes not only the brain, but the spine as well) and with contrast as a comparison. My non contrast MRI showed very little, the contrast MRI showed multiple lesions. With that said, people can present without lesions on their MRIs and still be diagnosed by the other criteria (clear blood work, obands in spinal fluid, evoked potentials, type and way your symptoms have presented).
As for the blood work, I'm unsure what your GP has done for blood, but I would imagine the neurologist you see will request specific blood work to rule out all mimics to MS.
What if the MRI comes out clear? What then?
And my GP has req a blood test to check for my muscles, will that help?
I got the run around, got pushed out of neuro #1's office, and went on to neuro #2 with a definite diagnosis of MS. It's not an easy disease to diagnose in some cases :).
Don't worry about the run around, but be clear that your MRI is of all areas that can be affected by MS (this includes not only the brain, but the spine as well) and with contrast as a comparison. My non contrast MRI showed very little, the contrast MRI showed multiple lesions. With that said, people can present without lesions on their MRIs and still be diagnosed by the other criteria (clear blood work, obands in spinal fluid, evoked potentials, type and way your symptoms have presented).
As for the blood work, I'm unsure what your GP has done for blood, but I would imagine the neurologist you see will request specific blood work to rule out all mimics to MS.
ellekay
09-06-2008, 02:09 AM
So when i go for an MRI, do i tell them that i want it done with the contrast? is that a dangerous thing at all?
Also during the MRI, will they be testing my spine or just my brain?
As a child i had a bruised spine and was apparent for many yrs. My spine was Blue/Purple. No injury or anything and no diagnoses because i dont think i ever saw a doc or i did and he dismissed me.
Another symptom perhanps?
Also during the MRI, will they be testing my spine or just my brain?
As a child i had a bruised spine and was apparent for many yrs. My spine was Blue/Purple. No injury or anything and no diagnoses because i dont think i ever saw a doc or i did and he dismissed me.
Another symptom perhanps?
Nenu
09-06-2008, 03:22 AM
Yes, make sure it's done with contrast, and say you want the spine included with the brain.
If you have any concerns about the contrast (I've got a lot of allergies so I was naturally concerned), talk with the nurses before the procedure. Let them know of any allergies you have, or adverse reactions you've had to various things. They'll watch you while you're in there, so don't panic about it. :)
If you have any concerns about the contrast (I've got a lot of allergies so I was naturally concerned), talk with the nurses before the procedure. Let them know of any allergies you have, or adverse reactions you've had to various things. They'll watch you while you're in there, so don't panic about it. :)
ellekay
09-06-2008, 03:33 AM
Okay great.
How long are you in there for?
Also, i remember a while ago being at the hospital for tummy pains and we had to do what i think was a CT scan. ( Dohnut shapped machine ) and they injected me with dye i think. I felt horrible as they warned me i would.
I felt abnormally hot, faint and like i weed myself, all from the dye which apparenltly is normal. Is the contrast the same?
I have a fear of confined places.
How long are you in there for?
Also, i remember a while ago being at the hospital for tummy pains and we had to do what i think was a CT scan. ( Dohnut shapped machine ) and they injected me with dye i think. I felt horrible as they warned me i would.
I felt abnormally hot, faint and like i weed myself, all from the dye which apparenltly is normal. Is the contrast the same?
I have a fear of confined places.
Nenu
09-06-2008, 03:40 AM
If you have a fear of confined places, tell the nurses (I explained this in the other thread). My nurse asked if I was nervous. I said heck no, I've been waiting for this test to get the answers I need!
I'm unsure if the same contrast is used. I too felt hot. They did say this would happen when they did the injection.
I only had my brain imaged. I wasn't sent for another MRI, because they found sufficient activity in my brain to diagnose MS.
I'm unsure if the same contrast is used. I too felt hot. They did say this would happen when they did the injection.
I only had my brain imaged. I wasn't sent for another MRI, because they found sufficient activity in my brain to diagnose MS.
ellekay
09-06-2008, 03:45 AM
Did they find lesions?
How long are you under for?
How long are you under for?
Nenu
09-06-2008, 05:12 AM
Did they find lesions?
How long are you under for?
They found a lot of lesions, in what they call the "MS area". Some older, some newer, some active and they could tell demyelination was occurring. Don't ask me how many lesions. I was never told a number!
I was in there for about 45 minutes, then they slid me out, did the contrast injection, then back in for another 15-20.
How long are you under for?
They found a lot of lesions, in what they call the "MS area". Some older, some newer, some active and they could tell demyelination was occurring. Don't ask me how many lesions. I was never told a number!
I was in there for about 45 minutes, then they slid me out, did the contrast injection, then back in for another 15-20.
ellekay
09-06-2008, 05:20 AM
Oh my goodness, 45 mins! Wow thats a long time to be in a coffin like machine. I have a feeling i will freak out.
Was that because they fouund abnormalities, or is every test that way?
I thought lesions were non cancerous tumors.
Was that because they fouund abnormalities, or is every test that way?
I thought lesions were non cancerous tumors.
Bearygood
09-06-2008, 10:13 AM
elle, what they inject is a contrast agent, not dye. Some people do have allergies and it has been found to be harmful in people who have kidney problems. The majority of people do not have any problems.
Re: lesions, the way the word is used talking about MS is different than in cancer. In MS they are scars. "Multiple Sclerosis" is Latin for "many scars".
Regarding your eye, it doesn't sound like it was the condition I was thinking about but regardless, you should get to an eye doctor now if it persists. Just FYI, there are neurological conditions of the eye. If an opthalmologist suspects that a problem is neurological, they will then (or should) send the patient to a neuro-ophthalmologist.
Re: lesions, the way the word is used talking about MS is different than in cancer. In MS they are scars. "Multiple Sclerosis" is Latin for "many scars".
Regarding your eye, it doesn't sound like it was the condition I was thinking about but regardless, you should get to an eye doctor now if it persists. Just FYI, there are neurological conditions of the eye. If an opthalmologist suspects that a problem is neurological, they will then (or should) send the patient to a neuro-ophthalmologist.
MSJayhawk
09-06-2008, 11:53 AM
Oh my goodness, 45 mins! Wow thats a long time to be in a coffin like machine. I have a feeling i will freak out.
They can give you a sedative. For me, I close my eyes and fall asleep right away. Just consider it 45 minutes away from a diagnosis!
They can give you a sedative. For me, I close my eyes and fall asleep right away. Just consider it 45 minutes away from a diagnosis!
Nenu
09-06-2008, 05:31 PM
Not to scare you, but I've heard of people in the MRI machine for 3 hours or more. It just depends on a lot of factors. I'm sure mine was 1h approx. due to them focusing on the brain and my right ear in the MRI. I think in retrospect my ENT somehow 'snuck' the contrast in there. Bless that man. They may not have found MS without the contrast.
Lesions in MS as Beary said are scars. As Jayhawk said, you can have a sedative if you're having anxiety or panic about the procedure.
If you can tolerate warmth, honestly my best friends at the hospital are warm blankets :). My nurses laugh when I go in for my IV solumedrol. They'll ask "Can I get you anything love?" (yes, they refer to me as hun, love, dear... best nurses ever in that place!). I say "Yeah, can you get me a warm blanket?". So they take 2 out of the warmer and I'm happy as punch. Their response, "That's all? Wow, you're easy to please!". LOL :)
Lesions in MS as Beary said are scars. As Jayhawk said, you can have a sedative if you're having anxiety or panic about the procedure.
If you can tolerate warmth, honestly my best friends at the hospital are warm blankets :). My nurses laugh when I go in for my IV solumedrol. They'll ask "Can I get you anything love?" (yes, they refer to me as hun, love, dear... best nurses ever in that place!). I say "Yeah, can you get me a warm blanket?". So they take 2 out of the warmer and I'm happy as punch. Their response, "That's all? Wow, you're easy to please!". LOL :)
ellekay
09-06-2008, 11:15 PM
I can tolerate warmth but not heat. Its then that i want to pass out and cant breathe. Im just gonna have to suck it up i think. Been through a lot worse.
So Nenu they tested your ear as well? Is this something that i need to req to the doc that i want done? because its def an issue that i would like looked into and fixed.
Also is the contrast injected with an IV?
AHHH the thought :(
So Nenu they tested your ear as well? Is this something that i need to req to the doc that i want done? because its def an issue that i would like looked into and fixed.
Also is the contrast injected with an IV?
AHHH the thought :(
ellekay
09-06-2008, 11:18 PM
Also the last time i had nose surgery for breathing, the night before i had to take a sedative pill, and although it relaxed me to a point where i didnt care about the world and everyone in it, i started to throw up and be sick constantly. Everytime i moved a limb, i would barf. :)
Nenu
09-06-2008, 11:23 PM
Well, I'd imagine if they're looking at the brain, they'll be looking at the whole area including the ear. Just ask at the MRI place :)
The contrast as I remember it was just a needle, not an IV, and the contrast solution was injected by needle. I was warned that I would feel a 'hot' feeling on my left side (the side they did the needle on, in the arm). That's exactly what I felt.
The contrast as I remember it was just a needle, not an IV, and the contrast solution was injected by needle. I was warned that I would feel a 'hot' feeling on my left side (the side they did the needle on, in the arm). That's exactly what I felt.
ellekay
09-06-2008, 11:35 PM
Okay cool Nenu, like i said im going to suck it up and hope for the best.
My neuro doc appt is not til November, but surely i can get an MRI done before then right? Does my GP take care of that if i ask him?
My neuro doc appt is not til November, but surely i can get an MRI done before then right? Does my GP take care of that if i ask him?
Wallis86
09-07-2008, 12:03 AM
You should be able to get your GP to order an MRI as long as your insurance will authorize it. It certainly doesn't hurt to ask. Make sure you ask SPECIFICALLY for what MRIs you need, brain with and without contrast, c-spine etc.
ellekay
09-07-2008, 12:04 AM
Insurance? I dont have insurance :confused:
Wallis86
09-07-2008, 03:17 AM
That might be me having a stupid moment... does Australia have National Health Care? Talk to your GP. They can tell you how to get the MRIs ordered one way or another.
ellekay
09-07-2008, 03:24 AM
We have healthcare for those that dont work ( but i do ) but we also have Medicare which means you see your doc for free. Not sure if that answers your question but i'll need to talk to my doc in any case.
Nenu
09-07-2008, 01:43 PM
We have healthcare for those that dont work ( but i do ) but we also have Medicare which means you see your doc for free. Not sure if that answers your question but i'll need to talk to my doc in any case.
If it's anything like Canada, you can see the neurologist at no cost, and the testing (MRI, LP, etc) are free. Crossing my fingers for you that this is the case :)
If it's anything like Canada, you can see the neurologist at no cost, and the testing (MRI, LP, etc) are free. Crossing my fingers for you that this is the case :)
ellekay
09-07-2008, 09:07 PM
Hey Nenu,
The cost to see my specialist is $180, any specialist appt is not covered under medicare, only when you see a GP. So im guessing i'll have to pay an arm and a leg to get the MRI done.
It sounds like in comparison to the states, that our healthcare system is lacking.
The cost to see my specialist is $180, any specialist appt is not covered under medicare, only when you see a GP. So im guessing i'll have to pay an arm and a leg to get the MRI done.
It sounds like in comparison to the states, that our healthcare system is lacking.
MSNik
09-07-2008, 09:29 PM
Elle, in the states, most of us which for national healthCare, like Canada has; until we read about the long waiting times to see specialists and what our Canadian friends live thru trying to get the help they need/deserve.So many of them wind up going private- or driving into the states to be seen ..
In the US, healthcare is sketchy at best. On its best day, we have world class specialists who are above and beyond health care in many places- on its worst day, we have the "run around" which can send us through more red tape looking for pre-arthorizations, pre-aprovals, and referrals. Each insurance company in the US requires different things to fulfill their needs. I happen to have excellent insurance, thru my husband; anther thing for me to be afraid of losing- however, my insuarnce is lacking in the respect that participating specialists are limited...therefore I pay out of pocket to see my MS specialist (about 250$ each visit, twice a year) and keep an "in-network" Neuro who happens to be very MS savvy around for my inbetween needs and meds! My MRIs are covered, however usually the radiologist who reads them is out of network, and I get billed for that part....nothing is perfect, huh?
Bottom line, its a crapshoot no matter where you live. Each country seems to have its pros and cons. I was speaking with a man from Germany yesterday, who is here on a Visa; he was explaining German health insurance to me- its not much better than ours and it costs him almost 700$ (equiv) a month to keep his family covered- and he is a Senior Director in a world class fortune 100 company! Just goes to show you..
hugs
Nikki
In the US, healthcare is sketchy at best. On its best day, we have world class specialists who are above and beyond health care in many places- on its worst day, we have the "run around" which can send us through more red tape looking for pre-arthorizations, pre-aprovals, and referrals. Each insurance company in the US requires different things to fulfill their needs. I happen to have excellent insurance, thru my husband; anther thing for me to be afraid of losing- however, my insuarnce is lacking in the respect that participating specialists are limited...therefore I pay out of pocket to see my MS specialist (about 250$ each visit, twice a year) and keep an "in-network" Neuro who happens to be very MS savvy around for my inbetween needs and meds! My MRIs are covered, however usually the radiologist who reads them is out of network, and I get billed for that part....nothing is perfect, huh?
Bottom line, its a crapshoot no matter where you live. Each country seems to have its pros and cons. I was speaking with a man from Germany yesterday, who is here on a Visa; he was explaining German health insurance to me- its not much better than ours and it costs him almost 700$ (equiv) a month to keep his family covered- and he is a Senior Director in a world class fortune 100 company! Just goes to show you..
hugs
Nikki
ellekay
09-07-2008, 09:46 PM
Wow its really not great anywhere you are in the world today, which is so sad because so many people are in desperate need.
I dont mind paying, as long as i get the right diagnoses. I hate being given the run around ( which im expecting to happen ) only to hear that they're not sure of whats wrong with me.
Im hoping that they dont find any tumors or anything serious like that, thats my main concern.
Also A QUESTION TO ALL ON HERE...
With a neuro issue, is it safe to be put under a general anesthetic? I ask because it does screw with your brain and muscles.
I am due next week to have a cystoscopy done ( internal exam to see why i get chronic urine infections ) and although this can be done while your awake, i'd rather be asleep, but i dont want a general anesthetic but rather a procedural sedation of some sort. Has anyone here ever had this done?
It may also be another MS symptom.
Im afraid of not waking.
Elle
I dont mind paying, as long as i get the right diagnoses. I hate being given the run around ( which im expecting to happen ) only to hear that they're not sure of whats wrong with me.
Im hoping that they dont find any tumors or anything serious like that, thats my main concern.
Also A QUESTION TO ALL ON HERE...
With a neuro issue, is it safe to be put under a general anesthetic? I ask because it does screw with your brain and muscles.
I am due next week to have a cystoscopy done ( internal exam to see why i get chronic urine infections ) and although this can be done while your awake, i'd rather be asleep, but i dont want a general anesthetic but rather a procedural sedation of some sort. Has anyone here ever had this done?
It may also be another MS symptom.
Im afraid of not waking.
Elle
Delilah008
09-08-2008, 08:25 AM
There are a lot of things to take into consideration with anesthesia. Your best bet is to discuss your concerns with the provider who is going to be giving you anesthesia and the surgeon.
Every case is different.
Every case is different.
Nenu
09-08-2008, 11:57 AM
Yes Canada does tend to have greater wait times. This can be attributed to a number of factors. The 2 that I personally think are highly responsible are lack of trained health professionals, and those who flood the clinics or emergency rooms with minor ailments.
MRI is free under Medicare. I was very fortunate and had mine completed in 1 week due to a cancellation. I was told the wait for the MRI here is usually 6 weeks to 3 months.
MRI is free under Medicare. I was very fortunate and had mine completed in 1 week due to a cancellation. I was told the wait for the MRI here is usually 6 weeks to 3 months.
ellekay
09-09-2008, 07:24 AM
Oh i hope thats not the case with me.
I had a horrible day at work today. I fell asleep at my desk. This fatigue is killing me.
I had a horrible day at work today. I fell asleep at my desk. This fatigue is killing me.
glamour girl
09-10-2008, 07:27 AM
Hi Elle, I actually read in another post that you are thalasemic and anemic. I have the same thing with me. Thala minor, thank godness.
That will also explain the fatigue. When i'm menstrating i make sure i eat extra meat and pump up in Iron foods. that can help too. Iron tablets alone wont do a thing for me.
sorry to hear its effecting your work. hope they are understaning.
Hey.. I just noticed your from Oz too.. Another Aussie on broard. welcome. :D
That will also explain the fatigue. When i'm menstrating i make sure i eat extra meat and pump up in Iron foods. that can help too. Iron tablets alone wont do a thing for me.
sorry to hear its effecting your work. hope they are understaning.
Hey.. I just noticed your from Oz too.. Another Aussie on broard. welcome. :D
ellekay
09-10-2008, 07:34 AM
Glamour girl your an AUSSIE!!!!!!!!!!!!!!!!!!!!!!!!
ha ha ha good to see, we are so rare on here. Population i suppose!
I too have thala minor, and it sucks hard but you learn to live with it cause your born with it. During that time of the month is the worst for me. I have passed out on many occasions as a result. Not fun at all.
When were you diagnosed with MS? Im seeing my neuro tomorrow for the first time and not sure what to expect. What should i expect?
And what are your symptoms for MS?
Elle
ha ha ha good to see, we are so rare on here. Population i suppose!
I too have thala minor, and it sucks hard but you learn to live with it cause your born with it. During that time of the month is the worst for me. I have passed out on many occasions as a result. Not fun at all.
When were you diagnosed with MS? Im seeing my neuro tomorrow for the first time and not sure what to expect. What should i expect?
And what are your symptoms for MS?
Elle
glamour girl
09-10-2008, 08:04 AM
There's a couple here from Australia. So glad i found this site.
I found out i had thal years ago when i had phenomena.. My hubby isn't a carrier. So I'm blessed with two gorgeous girls.
Your 1st Neuro app. I've seen a couple they all did pretty much the same tests in the office. The balance test. The reflex tests. then they looked right into my eyes, for inflammation i suppose. I've been dx 8 years now.
As for symptoms: They do vary, some have come and gone.
Numbness in my legs and hands. That come more in the heat.
Permanent numbness in my fingertips and the soles of my feet.
Have had ON at the start of the year. Thank god that went away.
Fatigue and balance issues.
Memory loss and loss of recollection of words.
Also continence issues that only started 1 year ago. BLAHHHH yuck
One tip i can tell you is to write all the questions you may have for the Neuro. So that way you don't forget. Another thing is to take all your reports that you may have from tests that you have had done. good luck with the appointment. I wait for your update.
I found out i had thal years ago when i had phenomena.. My hubby isn't a carrier. So I'm blessed with two gorgeous girls.
Your 1st Neuro app. I've seen a couple they all did pretty much the same tests in the office. The balance test. The reflex tests. then they looked right into my eyes, for inflammation i suppose. I've been dx 8 years now.
As for symptoms: They do vary, some have come and gone.
Numbness in my legs and hands. That come more in the heat.
Permanent numbness in my fingertips and the soles of my feet.
Have had ON at the start of the year. Thank god that went away.
Fatigue and balance issues.
Memory loss and loss of recollection of words.
Also continence issues that only started 1 year ago. BLAHHHH yuck
One tip i can tell you is to write all the questions you may have for the Neuro. So that way you don't forget. Another thing is to take all your reports that you may have from tests that you have had done. good luck with the appointment. I wait for your update.
ellekay
09-10-2008, 08:35 AM
Thanks glamour girl.
If my reflexes are okay, is that an indication that i dont have MS?
Although i have all the textbook symptoms, it'll be strange if i actually DONT have it. The numbess in my pinky finger is somewhat permanent now, has been present for about 10 yrs, so im gathering its here to stay, so is the ear thing.
The twitches in my muscles are new though and so is the distorted vision in my right eye. Scary stuff. I hope these arent the symptoms for a brain tumor?
Elle
If my reflexes are okay, is that an indication that i dont have MS?
Although i have all the textbook symptoms, it'll be strange if i actually DONT have it. The numbess in my pinky finger is somewhat permanent now, has been present for about 10 yrs, so im gathering its here to stay, so is the ear thing.
The twitches in my muscles are new though and so is the distorted vision in my right eye. Scary stuff. I hope these arent the symptoms for a brain tumor?
Elle
brclrk80
09-10-2008, 09:44 AM
When I had my initial testing done before my diagnosis, I had a ton of reflex testing performed. They checked in places I didn't even know you had reflexes! The only abnormal reflex was the one on the bottom of the foot. I believe it is called a plantar reflex? I was told this could indicate spinal lesions, which I later learned I have three.
Now, every time I visit my neuro he performs reflex tests on me and they are all normal, even the foot. I don't know if the doctor who initially performed the tests did it wrong or if reflexes can change that quick.
Now, every time I visit my neuro he performs reflex tests on me and they are all normal, even the foot. I don't know if the doctor who initially performed the tests did it wrong or if reflexes can change that quick.
Nenu
09-10-2008, 04:53 PM
Elle please, you need to stop stressing over the idea of a tumor. Hang in there girlie :)
ellekay
09-11-2008, 07:30 AM
Okay i had my first neuro appt today which was very interesting.
I had made out a list of all of my symptoms for him which came down to 26 symptoms all up that are concerning.
While reading them out to him, it seemed like his eyes were going to pop out of his head, he seemed worried as i presented with all the neurological issues in the world. Some recent and some from 8-10 yrs ago.
Anyway he did the usual reflex tests on me and checked my eyes with a light, then came down to the conclusion that the reason why i am numb in my fingers, toes, twitches in my muscles, blind in one eye at times, weak in legs etc...was because i need to excercise more! Ummm you can only imagine the look on my face when i heard that. Oh and the reason for my distorted vision was because of migrane?
Anyway i had to ask myself for an MRI, and he ordered me to do it WITHOUT CONTRAST as though he was paying for it himself. He said you dont need it so why bother sticking a needle in your arm for nothing, and that the reason ppl use contrast is to look for tumors which he doesnt think i have.
The people who conduct the MRI's will not use contrast unless its written in the referal, and he refused.
So unhappy with his dismisive attitude, i went back to my GP who thought the whole thing was bogus and a little extreme on the neuro's part and wasnt happy with what he has told me, so he has written out a new referal for me to do an MRI with contrast and to see another neuro and possibly another one after that to make sure we have the right diagnoses.
Im a little angry that 26 of my symptoms were thought to be the cause of lack of excersise.
Does that sound strange to anyone else, or just us?
Your thoughts please.
Elle
I had made out a list of all of my symptoms for him which came down to 26 symptoms all up that are concerning.
While reading them out to him, it seemed like his eyes were going to pop out of his head, he seemed worried as i presented with all the neurological issues in the world. Some recent and some from 8-10 yrs ago.
Anyway he did the usual reflex tests on me and checked my eyes with a light, then came down to the conclusion that the reason why i am numb in my fingers, toes, twitches in my muscles, blind in one eye at times, weak in legs etc...was because i need to excercise more! Ummm you can only imagine the look on my face when i heard that. Oh and the reason for my distorted vision was because of migrane?
Anyway i had to ask myself for an MRI, and he ordered me to do it WITHOUT CONTRAST as though he was paying for it himself. He said you dont need it so why bother sticking a needle in your arm for nothing, and that the reason ppl use contrast is to look for tumors which he doesnt think i have.
The people who conduct the MRI's will not use contrast unless its written in the referal, and he refused.
So unhappy with his dismisive attitude, i went back to my GP who thought the whole thing was bogus and a little extreme on the neuro's part and wasnt happy with what he has told me, so he has written out a new referal for me to do an MRI with contrast and to see another neuro and possibly another one after that to make sure we have the right diagnoses.
Im a little angry that 26 of my symptoms were thought to be the cause of lack of excersise.
Does that sound strange to anyone else, or just us?
Your thoughts please.
Elle
Nenu
09-11-2008, 11:36 AM
So unhappy with his dismisive attitude, i went back to my GP who thought the whole thing was bogus and a little extreme on the neuro's part and wasnt happy with what he has told me, so he has written out a new referal for me to do an MRI with contrast and to see another neuro and possibly another one after that to make sure we have the right diagnoses.
Thank goodness your GP is going to bat for you Elle. Even the possibility of 2 neurologists! Great! Sit back and relax now and have a breather. Things will eventually come together. Just remember that you can have faith in your GP currently to ensure that you are well examined.
If lack of exercise = MS mimic, pfft! I was eating a McD diet for years (I don't think I cooked for myself at all!) and sitting at a desk typing for 8 hours a day (outside of sitting at my home computer lol). I was the picture of how to throw yourself to the lions of bad health.
In that respect, MS 'saved' me, because I stopped eating fast food and began walking/exercising daily. I lost a lot of weight and I'm beginning to see muscle tone. Overall, more energy and a lot happier as someone with a disease :p. Funny how that works!
Thank goodness your GP is going to bat for you Elle. Even the possibility of 2 neurologists! Great! Sit back and relax now and have a breather. Things will eventually come together. Just remember that you can have faith in your GP currently to ensure that you are well examined.
If lack of exercise = MS mimic, pfft! I was eating a McD diet for years (I don't think I cooked for myself at all!) and sitting at a desk typing for 8 hours a day (outside of sitting at my home computer lol). I was the picture of how to throw yourself to the lions of bad health.
In that respect, MS 'saved' me, because I stopped eating fast food and began walking/exercising daily. I lost a lot of weight and I'm beginning to see muscle tone. Overall, more energy and a lot happier as someone with a disease :p. Funny how that works!
ellekay
09-12-2008, 04:05 AM
Ha ha ha thanks Nenu. Isnt that amazing? One bad thing can actually be quite good for you. So weird.
It only worries me that if nothing shows on the MRI, will i be dismissed then?
Because my body just doesnt feel right and its affecting everyday living.
I too dont exersise, but i have asthma thats induced if i do, plus i have a tiny frame, but really i should start to at least walk everyday. Its spring now so it would work :cool:
It only worries me that if nothing shows on the MRI, will i be dismissed then?
Because my body just doesnt feel right and its affecting everyday living.
I too dont exersise, but i have asthma thats induced if i do, plus i have a tiny frame, but really i should start to at least walk everyday. Its spring now so it would work :cool:
Lala9
09-12-2008, 01:12 PM
So, like many I do not have a dx of MS. But I have an appt. with a neuro coming up and have a lot of similar symptoms. I found it interesting that your doctor claimed you need to exercise more. While I do believe exercise is good, this is my concern... I am very active and for the past 3 months straight, before getting back to school, I went for 7 mile power walks every day. I don't feel this helped my symptoms in the least. In fact, the sensitivity to the heat caused me to feel dizzy, detached from my body, severe muscle twitches, etc. In a sense... couldn't the exercise just be bringing out the symptoms more?
LordBraska1999
09-12-2008, 01:35 PM
Lala,
There was a study I read not to long ago that was saying that patients with MS benifited from excersise on both a mental and physical level. From personal experence my wife who has MS, benifits from walking although she tires very quickly obviously. My mom who passed from Devick's excercised religiously and always stated that she felt better when she did. Both had to take naps after their walks, but both also say they feel better during the day when they do excersise. The other thing you have to remember is MS is among other things an autoimmune condition. In my mom's case she used to take vitamins all the time to boost her immune system so she wouldn't get sick very easily. This actually strenthend the disease causeing demyelination faster and in the end it was pnumonia that ended everything. but as others have stated, MS is a very diverse disease in terms of how it acts from person to person.
There was a study I read not to long ago that was saying that patients with MS benifited from excersise on both a mental and physical level. From personal experence my wife who has MS, benifits from walking although she tires very quickly obviously. My mom who passed from Devick's excercised religiously and always stated that she felt better when she did. Both had to take naps after their walks, but both also say they feel better during the day when they do excersise. The other thing you have to remember is MS is among other things an autoimmune condition. In my mom's case she used to take vitamins all the time to boost her immune system so she wouldn't get sick very easily. This actually strenthend the disease causeing demyelination faster and in the end it was pnumonia that ended everything. but as others have stated, MS is a very diverse disease in terms of how it acts from person to person.
Nenu
09-12-2008, 05:58 PM
Other than walking (and I don't walk that far), I do short repetition exercises with hand weights, left lifts, crunches daily.
Keeps the muscles moving, and I feel better knowing I'm putting effort into maintaining muscle tone. :)
Keeps the muscles moving, and I feel better knowing I'm putting effort into maintaining muscle tone. :)
gabika1979
10-13-2009, 07:50 PM
ellekay, you are panicking, and there is no need to panic. I do understand, its horribly scary to think of having MS, but over 400,000 people in this country have it and you would never know it! Because the disease is being studied so much right now, things are happening in a good way for us...new drugs, new chances at slowing down any progression- all sorts of positive things.I hate to say it, but if ever there was a time to get MS, now is it.
You need to see a doctor, however November is not that far away..a few weeks/ months is not going to make a difference. Some docs feel that you should be on DMDs (disease modifying drugs) as soon as possible, to prevent further attacks, lesions or symtoms....however, the drugs do not help anything that has already happened. I woke up one day with a numb tingley hand and thought I slept on it funny....one thing led to antoher and boom. MS dx within the month. 2 years later, still have no use of that hand or fingers...and Ive had optical neuritis, and some other wiggy symtoms, alot of fatigue, etc...but im still working, still driving a car, taking care of my family and acting normally. You just learn to pace yourself better. Its very important to listen to your body, avoid things that stress you out as much as possible and of course eat right, exercise and take supplements.
So is it normal to feel like you are describing...anxiety and stress, both of which you are facing in spades- will do it to you, MS will do it to you as well. No one knows what is going to happpen and as Jayhawk states, we are all created differently. If I told you I had more then 50 lesions on my brain AND black holes where the old lesions are deteriorating, Youd never know. I have a 4.0 GPA, am starting my doctorate (i think) in January and exercise regularly. No one I work with knows I have MS...but thats another story for another time.
Hang in there...it takes most people months to get a dx- read up on the Mcdonald Criteria..thats the usual necessary criteria to obtain a dx...and in the meantime, you can have a regular doc order a MRI of brain / spine WITH and WITHOUT contrast..you could have it done and ready to take to the MS specialist..
hugs
Nikki
WAW, I am reading your post again and again and only being just diagnosed I feel so much better, you make it sound so much better, thanks a lot!!!!
You need to see a doctor, however November is not that far away..a few weeks/ months is not going to make a difference. Some docs feel that you should be on DMDs (disease modifying drugs) as soon as possible, to prevent further attacks, lesions or symtoms....however, the drugs do not help anything that has already happened. I woke up one day with a numb tingley hand and thought I slept on it funny....one thing led to antoher and boom. MS dx within the month. 2 years later, still have no use of that hand or fingers...and Ive had optical neuritis, and some other wiggy symtoms, alot of fatigue, etc...but im still working, still driving a car, taking care of my family and acting normally. You just learn to pace yourself better. Its very important to listen to your body, avoid things that stress you out as much as possible and of course eat right, exercise and take supplements.
So is it normal to feel like you are describing...anxiety and stress, both of which you are facing in spades- will do it to you, MS will do it to you as well. No one knows what is going to happpen and as Jayhawk states, we are all created differently. If I told you I had more then 50 lesions on my brain AND black holes where the old lesions are deteriorating, Youd never know. I have a 4.0 GPA, am starting my doctorate (i think) in January and exercise regularly. No one I work with knows I have MS...but thats another story for another time.
Hang in there...it takes most people months to get a dx- read up on the Mcdonald Criteria..thats the usual necessary criteria to obtain a dx...and in the meantime, you can have a regular doc order a MRI of brain / spine WITH and WITHOUT contrast..you could have it done and ready to take to the MS specialist..
hugs
Nikki
WAW, I am reading your post again and again and only being just diagnosed I feel so much better, you make it sound so much better, thanks a lot!!!!
MSNik
10-13-2009, 08:00 PM
Im glad you feel better! I was wondering who resurrected a post from over a year ago!!
why dont you start a new thread and tell us about yourself so we can be helpful to you...welcome to our boards, and YES a MS diagnosis is something you can survive!!!
Hugs
Nikki (MSNik)
why dont you start a new thread and tell us about yourself so we can be helpful to you...welcome to our boards, and YES a MS diagnosis is something you can survive!!!
Hugs
Nikki (MSNik)
gabika1979
10-14-2009, 04:44 AM
Hi there then,
I am 30 years old woman, from United Kingdom, married with 2 small boys and just been diagnosed with relapsing remitting MS.Looking back I had some on and off symptoms for at least 2 years, possibly up to 5 years ago.Panicking a lot as I need to drive my boys to school etc.Thanks to your post I realised that I got hopefully at least 15 years of moving around so that made my day!
I am not on any medication as I refused one for now as was planning to have baby no.3 next year and can't make my mind up on that yet, whether its fair to have it etc.What are your thoughts?
Thanks a lot!
I am 30 years old woman, from United Kingdom, married with 2 small boys and just been diagnosed with relapsing remitting MS.Looking back I had some on and off symptoms for at least 2 years, possibly up to 5 years ago.Panicking a lot as I need to drive my boys to school etc.Thanks to your post I realised that I got hopefully at least 15 years of moving around so that made my day!
I am not on any medication as I refused one for now as was planning to have baby no.3 next year and can't make my mind up on that yet, whether its fair to have it etc.What are your thoughts?
Thanks a lot!