is it really ms?

[chloe739]

i was diagnosed with ms 4 years ago. i have not had any major symptoms besides fatigue, slight numbness/ tingling, and dizziness since my initial onset. i recently had my b12 levels checked and they were in the low 200s. through research i have found some cases of b12 deficiency being misdiagnosed as ms. i had an mri as well as a spinal tap that both proved positive for ms. i have always considered myself lucky to have such a "slight" case, but was now wondering if i could have been misdiagnosed as well. is it possible to have lesions on the brain and a positive lp if ms is not the case? or is the deficiency most likely caused by the ms? any feedback would help

[AnyaD]

   I hope they misdiagnosed you, but if not - maybe you have a benign case and it's not a bad thing.
   I went to see a neurologist 7 months ago because I had a numb thigh. She told me right away it could be MS because I was 27  and numb thigh could be caused by a lesion in my spine. I had an MRI and it showed a couple of small old lesions and my diagnosis was made just like that, though a spinal tap was negative for oligoclonal banding. She insisted on me taking drugs and I refused to believe I had MS, like probably every newly diagnosed. I was searching for answers on this forum and somebody mentioned Lhermitte's. I bent my neck and realised I got it. This is how I know I might have MS though I have no other symptoms and nothing changed on my MRI since 6 months ago. I am confused, I am afraid to waste time by not being on MS therapy, but at the same time I don't want to start taking drugs without being sure. I am sure you already read this one

http://www.medicalnewstoday.com/articles/12671.php

   I would be very happy not to have any symptoms in 4 years, you don't find posts like yours here....usually it's a ton of symptoms and no diagnosis or ton of symptoms and definite MS.  I guess people who feel good, just don't hang out here too often, though everyone here seems to be great and very helpful. You gave me hope !!! Take care !!!

[biowham]

Caveat: I am not a doctor, and these would be great questions for your doctor.

That said,...

The CSF results would not relate to low B12. As people here will tell you, MS is a diagnosis of exclusion, i.e., you test for all possibilities until the only reasonable remaining explanation is MS. I don't know exactly what they saw on your MRI, but if they could not exclude MS based on the MRI and could not exclude MS based on the CSF results...there just isn't much in the way of options to explain both of those results together, along with your fairly typical symptoms. I'm guessing that those B12-MS diagnosis confusions probably did not rely on CSF and MRI results as part of the diagnostic process. There can be areas of demyelination in the brain as a result of B12 deficiency, but those likely present in a different distribution than the "typical" (nobody hurt me!) MS pattern. Did you have plaques on your corpus callosum? That's not a B12 kind of place.

During your initial workup, somebody ought to have tested your B12 levels; that should be part of this diagnosis of exclusion. Do you recall having had bloodwork done or what the results were? Are you a vegetarian or were you?

It is possible that some of your symptoms (numbness, tingling) relate to low B12. You can do shots or supplement (I take "stress B," which is supposed to provide the best absorption and is a B complex with ester C) and see if that improves anything. But it won't make O-bands in your CSF or plaques on your brain disappear, as far as I know.

E