Probable MS Dismissed

[Arijana]

I am a 43 year old, healthy, working woman, intially diagnosed with probable MS after an MRI showed white matter lesions.  MRI was ordered after unexplained eye blurriness, stiff, sore muscles in all limbs, some bladder dysfunction and extreme fatigue.  The LP results indicate no onigloconal banding; my neurologist is now ruling out MS entirely. Although encouraged by this news in one sense, I'm discouraged that I have no diagnosis.  Physical symptoms aside, should I be concerned at all by the lesions?  I'm also scheduled for MEG and Evoked Potential tests; should I continue with these tests with the negative diagnosis?

Appreciate any guidance you can provide.
Thank you

[patsy10]

I have not had any lesions on any testing.  My neuro said I would have lesions if I had MS.  If you want to research lyme you can go to canlyme dot com for the Canadian lyme association or look at lymenet dot org here in the US.  My friend who lives in NB, Canada has lyme.  I really would request an appt.with an MS specialist.  These doctors specialize in diagnosis, treating, ruling in or out MS and diseases that mimick MS.  My friend in Canada had to wait over a year for an appt. with an MS specialist!

[Arijana]

I'm starting to discover that perhaps my Neuro dismissed this too quickly; even before the SSEP, BSEP VEP and EMG he ordered.  I'll follow thru with these tests and in the interim perhaps also find a MS specialist.  I'm not looking for MS; I'm looking for to validate these symptoms I have and in talking to my local MS chapter and others like yourself, my gut feeling is this is what I have and I'd rather start some form of treatment now as all indications are early treatment lends to better quality of life.  Thanks

[Arijana]

I'm actually in North Bay, Ontario, Canada and yes there are deer.  I don't ever remember having a bite or rash, but certainly my symptoms mimic yours minus the increased heart rate.  I don't know enough about lyme disease so I'll start a little research.  Thanx

[6-paq]

I have 2 lesions that are suspicious for MS.  My LP also showed no O-bands or elevated protein.  I have had an SSEP, BSEP, VEP and EMG/NCV.  Those all were "normal".

My neuro is still calling me "possible MS" and is following me with periodic visits and I just did a repeat MRI today.  He also told me that an LP can be "normal" in early stages of MS.

I would definitely continue with the tests.  And perhaps seek a second opinion from another neuro.  What was your neuro's explanation of the lesions if he ruled out MS??

Good luck!

[patsy10]

I don't have any lesions on testing.  I have had a spinal tap.  Here's some of my symptoms:  numbness, tingling, twitching, muscle and nerve pain, blurred vision, burning, stinging and cold sensations, rapid heart rate, arm and leg heaviness and weakness feelings.  There is more too.  I think North Bay is Mich???am I correct??  You don't have to be in an endemic area to get lyme.  Where there are deer, there is lyme.  Less than half of people remember a rash or bite.  Not saying this is what you have it's something to look into.  They told me there was no lyme in Ohio.  Funny, PA is endemic.  I'm just over an hour from the PA border.  We have the same climate, lots of deer.  My next door neighbor got it and had CDC positive tests.  You can get it if you travel as well to an endemic area.

[Arijana]

Do you have lesions as well?  I'm not in a risk area for lyme disease and have never noticed rashes.  Have you had a spinal tap?

[patsy10]

II would have the other tests done.  I had them done myself.  Supposedly, the evoked pot. test is very sensitive in showing lesions that don't appear on MRI.  I would also get a second opinion from an MS specialist if your neuro isn't one.  I have a lot of your symptoms with no definite diagnosis either.  It's very frustrating.  Something is causing those lesions.  One thing that can cause all those symptoms and lesions is untreated lyme disease.  This a possible diagnosis for me as I had the rash and spend lots of time in the woods.