Hi Jayne, another Canuck in BC here.

My first symptom was numbness that started in one foot, made it's way up to my chest, jumped over the the other foot, and that side went to slightly above my breast. That was in 1991, although I probably had less debilitating symptoms going back to the late 70's.

I had a LP to rule out mennigitis, etc., but the test was botched. I wouldn't let them give me a MRI or any other testing after that.

They told me it was likely to be MS ... and I ran for the hills. I never had another conversation with ANY doc about it until 2003. Then the same thing happened, only this time both sides were affected right off the bat. The numbness went to my almost my neck that time, so they new it was a new spinal lesion. I was very affected for a long time after that attack, and I couldn't work for a while. I was forced to get a MRI in order to be approved for STD.

There was really not much question about it being MS after 1991, although I went with the alternative possibility of a "virus that entered your central nervous system". Little did I know that that wasn't any more desirable of an outcome.

What did your MRI results say, ie. what is "relatively clear"? Did they do a lumbar puncture? Have you had the ANA (or whatever it's called) for lupus? Could the rash be from that (that is not a MS symptom, btw)?

Sounds like you have a good team of specialists on your side anyway.

Cherie

Welcome, Jayne! This is a great place for info, support, laughs, tears, and fun.
Sorry you're experiencing the frustration of not knowing what's up...been there.
I had fibro since 85, and began having neuro sxs in 04...finally was put on a DMD after sxs got in the way of living life...and lesions popped on MRI.
New neuro still won't definitively say MS, but MRI shows things that are "very typical" of the disease, so he's keeping me on the DMD, and working with me to control the symptoms without frying my brain, which my old neuro seemed to do with ease.
Good luck with finding out what's going on, and never give up!

Hello Jayne, and welcome to NeuroTalk!

I know how frustrating it can be trying to get a diagnosis. I've been living with MS for a long time, and the disease itself is very frustrating.

This is a great forum, along with The Stumble Inn. There are a great many caring, friendly, and helpful people here.

We're so glad you found us!