Differential DX for Demyelinating Disease

[COBOB]

I am a 48 year old male. I had a diagnosed episode of Optic Neuritis back in the April time frame.  I was also experiencing  burning dysesthesias in my forearms, hands and feet bilaterally,  I was treated with 1 GM Prednisolone IV x 3 days.  B-12, Lyme Titers, STS, CMV, Cryoglobulin, HIV were all Neg/Normal.  A 1.5 Tesla MRI of brian and neck showed one  T2 PSE lesion of the brain w/o contrast. No GAD enhancing lesions. VEP showed decreased amplitude and CV for my right eye.  LP was negative for OCBs, and slightly elevated protein. . About a month ago I was struck with right sided maxillary facial pain that the Neurologist diagnosed as Trigeminal Neuralgia.  I was stated on Tegretol.100 mg BID.  I'm up to 200 mg BID and it is providing some relief.  I can understand that I fall outside the typical criteria for MS, but what else should be considered?  I seem to be having different episodes of demyelination and in different locations (CN 2, CN5, brain?)  Like most patients, I would like to know what is going on, but more importantly, I'd like to stop or limit the damage.  I should be going in for a second head and neck MRI in a month or so on a 3 Tesla unit. Any suggestions?

[illinwithoutacause]

hi again,

i am certainly no expert in the field, but from reading the posts on the lyme board here on medhelp, i have learned that the ELISA test is notoriously inaccurate.  if that remains a concern for you, in order to get a better idea of whether lyme is an issue for you, it is best to get more accurate testing through Igenex labs in california.

i hope you get some answers and relief very soon.

blessings,
binx

[COBOB]

They just did the ELISA.  I should have some Lyme's titer since I was one of the original kids in CT that had Lyme Arthritis back in 1977.  I was in one of the early study groups at Yale.  The Lyme titter was done prior to steroids.  The MRI was done during the second day of steroids.  The steroids may have helped with the ON a bit and it seemed to help some with the burning in the hands and feet for a few weeks.  With the Tegretol, it seems to be helping with the TN and has reduces the pain in my hands and feet.

Thanks for the response.

Bob

[illinwithoutacause]

hello COBOB,

and welcome to the board, as sorry as i am that you have found yourself in a position to be here.

it sounds like you are following the right path to have a higher-powered MRI done in a relatively timely fashion which is good.  i have one question though--did you have your lyme testing done after the steroid therapy or before?  from what i understand, it can alter the results.  also, did you have ELISA testing done or was it done through Igenex labs in california?  also, how did you respond to the steroids?  did they help with your ON and/or burning hands and feet?

i saw that you posted on the MS board as well, and that will be very helpful as there are a lot of very experienced folks there who will give you some good advice about what other testing could help determine what is going on.

take good care and keep us posted as things unfold.

best wishes,
binx