Hi Patricia:

Sounds like you have been going through a very frustrating experience. Many of us can relate.

I too have three negative MRI's (except for CC atrophy and cerebral atropy) over 10 years but have "compelling" evidence for MS - history, neurogenic bladder/bowel, spasticity, diplopia and blurry vision, hyperreflexia, weakness, fatigue, cognitive tests that are compatible with MS etc etc. My symptoms started 30 years ago and worsened significantly 15 years ago.

In spite of numerous searches I have not been able to find out how they diagnose the 5% of people who don't show lesions. While my evoked potentials are normal, my MS neuro doesn't want to do an LP at this point in time. She is treating the symptoms - Amantadine for fatigue and Baclofen for spasticity. My quality of life went from 10% to 90% with symptomatic treatment. Sometimes I need my cane, most of the time I don't.

I hate not having a dx. My family doctor doesn't take me seriously and the MS clinic is 5 hours away. At least they have MS nurses who return phone calls and go out of their way to help. My MS neuro is awesome.

Have you been assessed at an MS clinic? For years the neuro I saw was the head of the MS clinic in the city I living in down south, he didn't know what was wrong either, he just kept saying "I don't think it's MS". When I moved up north and went to the MS clinic in another city, I started showing neurological signs. They won't discharge me now despite the three negative MRI's because of that. Incredible care. It makes not having a dx manageable.

Limboland sucks. Getting the symptoms treated - priceless.