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Old 02-25-2008, 10:38 PM #1
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Unhappy Lesions and diagnosies

HI all,

I had a lesion located via MRI on my cervical spine in november of last year, i was then sent for a round of tests including a lumbar puncture,eye nerve test, bloods, and an MRI on my brain. The lumbar puncture came back positive for oligoclonal bands, bloods and eye nerve tests came back negative and the MRI came back showing 12 lesions on my brain - the radiologist said that these were not the usual size or site of ms lesions due to the treatment i had undergone for the lesion on my spine, but he still felt they were demylenation. Initially my neurologist diagnosed me with MS and suggested going into clinical trials. Then changed his mind saying that he wanted to wait until i had a second clinical episode of ms before beginning any treatments. I am confused as if these lesions are not from ms, what would they be considering all the other test results and the radiologists report? Can anyone think of any reasons for the change of heart? My neurologist is not great at explaining things and makes me feel stupid when i ask questions or tell him about things such as my legs going numb when i walk, falling over and excessive fatigue.
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Old 02-25-2008, 11:22 PM #2
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Hi Molpep! Welcome.

I don't know why the change of heart. It may be that he is stick with the criteria for a definite diagnosis of MS. I did not receive mine right away either despite the lesions. I had the lesions but no clinical findings for a few years. Even at that it was my second flare of new/old symptoms that got me diagnosed as definite MS.

Should this be definite MS, please make sure you find a team of doctors that you can work with and who can work together. You should feel comfortable asking questions. You should never leave the office feeling stupid.

Please let us know how you do. There are a great many of caring people here at NT with a lot of knowledge and experience. We are here to support you.
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Old 02-25-2008, 11:30 PM #3
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Hi Molpep! Welcome.

I don't know why the change of heart. It may be that he is stick with the criteria for a definite diagnosis of MS. I did not receive mine right away either despite the lesions. I had the lesions but no clinical findings for a few years. Even at that it was my second flare of new/old symptoms that got me diagnosed as definite MS.

Should this be definite MS, please make sure you find a team of doctors that you can work with and who can work together. You should feel comfortable asking questions. You should never leave the office feeling stupid.

Please let us know how you do. There are a great many of caring people here at NT with a lot of knowledge and experience. We are here to support you.
Thanks so much! This is such a good forum...makes me feel not so isolated! X
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Old 02-25-2008, 11:45 PM #4
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I recently read that migraines can cause leisons in the brain. I don't know if you have a history of headaches. HTH

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Old 02-25-2008, 11:49 PM #5
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Hi there molpep,

I can understand your confusion. To get an MS diagnosis must have been mind blowing in itself, but to have it ripped away again so soon, must leave you in a big quandry, not having any clues at all as to what's going on.

I believe that brain and cervical lesions can be caused by other things apart from MS. Migraines for example, cause brain lesions........so please give your doctors time to try and put all the pieces together, so they can come up with the correct diagnosis and the right treatment, for you.

Unfortunately the road to doiagnosis of any kind can be long and laboured. Hang in there. We're on your side!
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Old 02-26-2008, 12:57 AM #6
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Quote:
Originally Posted by molpep View Post
HI all,

I had a lesion located via MRI on my cervical spine in november of last year, i was then sent for a round of tests including a lumbar puncture,eye nerve test, bloods, and an MRI on my brain. The lumbar puncture came back positive for oligoclonal bands, bloods and eye nerve tests came back negative and the MRI came back showing 12 lesions on my brain - the radiologist said that these were not the usual size or site of ms lesions due to the treatment i had undergone for the lesion on my spine, but he still felt they were demylenation. Initially my neurologist diagnosed me with MS and suggested going into clinical trials. Then changed his mind saying that he wanted to wait until i had a second clinical episode of ms before beginning any treatments. I am confused as if these lesions are not from ms, what would they be considering all the other test results and the radiologists report? Can anyone think of any reasons for the change of heart? My neurologist is not great at explaining things and makes me feel stupid when i ask questions or tell him about things such as my legs going numb when i walk, falling over and excessive fatigue.
Just clarifying how this all began - In November i went to see my gp about the fact my entire body from the chest down had gone 'numb'. She sent me to a neurologist.
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Old 02-26-2008, 07:24 AM #7
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You could get a second opinion.

Brain lesions can be caused by more than just MS but I am not aware of anything but MS causing cervical spine lesions - I could be wrong though.

And as others have said your neuro is probably going by the McDonald Criteria and doesn't feel you "fit" yet.
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Old 02-26-2008, 08:35 AM #8
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Hmmm I'm actually reading this differently. I'm thinking that he is stuck on the criteria for clinical trials. Often, that criteria is very strict. If you have some atypical findings, you would be automatically excluded. The MacDonald criteria is usually pretty strictly adhered to for trials, but less so by neuros just to dx you and put you on standard mainstream treatments.

Is your neuro willing to put you on standard MS treatments like the CRAB drugs?
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Old 02-26-2008, 01:19 PM #9
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hey Mol!!

Call the doc and ask for clarification. If you have to make an appointment (to rule out the nurses clarifying FOR him!) There shouldn't be any problem sitting down with you and going over all your questions and concerns....

It is not uncommon to get the run around in MS! They really just want to make sure you have it and not something else!

The few that get dx right of the bat are really not the norm....

Take Care and I'm glad you found us!
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Old 02-26-2008, 01:41 PM #10
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Quote:
Originally Posted by Snoopy View Post
Brain lesions can be caused by more than just MS but I am not aware of anything but MS causing cervical spine lesions - I could be wrong though.

And as others have said your neuro is probably going by the McDonald Criteria and doesn't feel you "fit" yet.
Transverse Myelitis has the same spinal lesions, and it presents exactly as molpep has described her Nov attack. It can be idiopathic, but ends up as MS dx a good % of the time too:

http://www.ninds.nih.gov/disorders/t...s.htm#41903234

O-bands can be found in other diseases, as can various shapes/sizes of brain lesions. He would want to be sure they are the "MS" variety . . .

I think you are right, Snoopy, he may be waiting for the second attack or change in MRI (McDonald criteria).

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