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Doubting my MS diagnosis
Hello,
I'm a 25 year old female who was recently diagnosed with MS in January following a single episode of numbness that was especially prominent along the distribution of the median nerve but occurred to some extent along the entire right side of my body from the shoulder down. This numbness began just after I started having symptoms of a severe case of tonsillitis. The numbess persisted after I recovered from the tonsillitis so I went to see a neurologist where I had a MRI done. It showed a lesion at C4 and a couple of small lesions in the brain. There was no evidence of any previous demylination events. I was diagnosed with MS based on this and started on copaxone. I demanded further testing and had visual evoked potential performed and CSF analysis. The visual evoked potentials were normal. My CSF showed no myelin basic protein, no oligoclonal bands, and an IgG synthesis index of 0.64. My neuro called this IgG index "elevated". However, when I look it up I find that it needs to be greater than 0.7 to be consistent with MS. What do you think? I realize that MS is a hard diagnosis to accept but I can't help but think it's being based more on demographics than anything else. My neuro won't even entertain post-infectious myelitis because of my age even though I had a definite history of preceding infection. Of possible interest, I've started getting fevers and rashes over the past couple of weeks but my neuro is very dismissive of them. Am I in denial or is my sketicism warranted? Thanks in advance for your time.
I'm a 25 year old female who was recently diagnosed with MS in January following a single episode of numbness that was especially prominent along the distribution of the median nerve but occurred to some extent along the entire right side of my body from the shoulder down. This numbness began just after I started having symptoms of a severe case of tonsillitis. The numbess persisted after I recovered from the tonsillitis so I went to see a neurologist where I had a MRI done. It showed a lesion at C4 and a couple of small lesions in the brain. There was no evidence of any previous demylination events. I was diagnosed with MS based on this and started on copaxone. I demanded further testing and had visual evoked potential performed and CSF analysis. The visual evoked potentials were normal. My CSF showed no myelin basic protein, no oligoclonal bands, and an IgG synthesis index of 0.64. My neuro called this IgG index "elevated". However, when I look it up I find that it needs to be greater than 0.7 to be consistent with MS. What do you think? I realize that MS is a hard diagnosis to accept but I can't help but think it's being based more on demographics than anything else. My neuro won't even entertain post-infectious myelitis because of my age even though I had a definite history of preceding infection. Of possible interest, I've started getting fevers and rashes over the past couple of weeks but my neuro is very dismissive of them. Am I in denial or is my sketicism warranted? Thanks in advance for your time.
Did your fever and rashes start after beginning the MS treatment?
Jmcc, you apparently have some Lyme knowledge. Please see my post under "buzzing in legs" dated 3/14/06. I would like your opinion.
I have thought about MS as well. However, one neurologist said I was "too old" to get it. Another did not test the spinal tap for MS because she said she did not "think" I had it.
I have thought about MS as well. However, one neurologist said I was "too old" to get it. Another did not test the spinal tap for MS because she said she did not "think" I had it.
Hello fellow basic sciences person. I'm assuming you already have your Ph.D.? I'm at the very beginning of a M.D./Ph.D. program so I have a LONG way to go.
I'm just conflicted about my diagnosis. On one hand, I don't want to stop taking the Copaxone and then have another episode a sometime in the future and go "Oh ****!". One the other hand, the medication is costing my insurer $1500 dollars a month! I've done quite a bit of reading on the topic and know that I have some of the "red flags" that suggest another condition that may be mimicking MS. I don't doubt that I have something inflammatoy going on I'm just not quite convinced that it's MS having had only one episode of neurological symptoms. I'm thinking of possibly seeing a rheumatologist. Perhaps they'll have a more open mind?
I'm just conflicted about my diagnosis. On one hand, I don't want to stop taking the Copaxone and then have another episode a sometime in the future and go "Oh ****!". One the other hand, the medication is costing my insurer $1500 dollars a month! I've done quite a bit of reading on the topic and know that I have some of the "red flags" that suggest another condition that may be mimicking MS. I don't doubt that I have something inflammatoy going on I'm just not quite convinced that it's MS having had only one episode of neurological symptoms. I'm thinking of possibly seeing a rheumatologist. Perhaps they'll have a more open mind?
Thus, the second opinion.
demographics are of some importance and MS is a disease of the 20'2, you are near the hallmark age for early/new MS. I respectfully disagree with the laste comments. Lyme is not uncommon and it is not a rediculous claim otherwise it would not be so commonly noted on MRI findings. I suggest that you look at canlyme.com and go from there.
It may very well be MS, but even if something is rare it is important to educate yourself on other possibilities. The latter commenter also does not know your neurologist and there are quacks in every field. I do not know him either, thus I do not have an opinion in that regard.
Again, this is your body and your life and it is not strange that you have concerns. It is also not easy to "relax" with the multiplicity of factors (non clinical) that surround these types of diagnoses.
Regards.
It may very well be MS, but even if something is rare it is important to educate yourself on other possibilities. The latter commenter also does not know your neurologist and there are quacks in every field. I do not know him either, thus I do not have an opinion in that regard.
Again, this is your body and your life and it is not strange that you have concerns. It is also not easy to "relax" with the multiplicity of factors (non clinical) that surround these types of diagnoses.
Regards.
I have read this question and a comment you posted on a previous question. First, get demographics out of your mind. There are correlations with everything ( i.e. "coffee drinking increases risk of heart disease", "an aspirin a day keeps the doctor away", "eat less fats , you decrease your risk of colon cancer".
Your neurologist earned his title with much hard work. He doesn't make decisions lightly. I am sure he feels he needs to watch you closely. Because he made a MS diagnosis doesn't mean he will forever stick to it forever, if other factors start to warrant a change in thinking. Get a second opinion to put your mind at ease. Be wary of Lyme, etc...as it is not all that common. ( as one might believe reading this forum ) You are very young and time can change everything ( including any incorrect diagnosis ) . Your physician is not wasting time in circumventing treatment when it possibly counts the most ( i.e , you possibly may have changes in your spinal fluid analysis later. ) Let's see what the forum MD has to say. Relax. You are so young.
Your neurologist earned his title with much hard work. He doesn't make decisions lightly. I am sure he feels he needs to watch you closely. Because he made a MS diagnosis doesn't mean he will forever stick to it forever, if other factors start to warrant a change in thinking. Get a second opinion to put your mind at ease. Be wary of Lyme, etc...as it is not all that common. ( as one might believe reading this forum ) You are very young and time can change everything ( including any incorrect diagnosis ) . Your physician is not wasting time in circumventing treatment when it possibly counts the most ( i.e , you possibly may have changes in your spinal fluid analysis later. ) Let's see what the forum MD has to say. Relax. You are so young.
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