What is this diagnosis: 3 neuros don't know

[BetteB]

Seen 3 neuros with no clear answer on dx. MVA: closed head injury 03: age 48 with LOC, electrical burn 220 volts age 8-9 years old arc over hands orange with blue aura, MVA closed head injury: age 10: no recall with LOC; Mild symptoms until age 45 in retrospect: 1x aura with seizure age 28 and arms went dead at night totally, urinated down leg with no feeling or warning or sensation: age 35, fell on knees: no warning age 36; loss of muscle mass right leg and buttock about 1/4 inch: no change since: 35, spinning like drunk age 35 for 3 weeks no ear infection, intermittent 20-30 minute intervals: went away. Age 45: stiffness in legs when walking briskly; this insidiously continued on and off and now I take keppra 1500 a day, 1.0 klonopin, baclofen 30mg most recent add on due to severe leg stiffness and wobbling. Legs go out when hot and mowing lawn, EMG: legs very abnormal with slowed NCV, arms: sudden thenar atrophy hands: 4 months ago; EMG normal. MRI: post 2nd MVA: nothing, 04: 3 small lesion subcortical white matter not significant, 05: 1 doc says MS, 06: specialist seen: thinks I am crazy, 3rd doc: thinks neuropathy; no spinal tap, no muscle nerve biopsy, arms and legs painful; on restriction to 20 pounds weight arms, 1 hour walking a day. Very fatigued mentally and physically, food tasteless. Heat intolerance. Brother with high oligoclonal bands, no head mri done, burning, tingling different spots of body or numbness. I am tired of this and need an answer. What can this be? what tests do I take? Can't go up stairs without super high heart rate and leg lock up. Unbelievable

[patsy10]

I think more of a work-up is needed....spinal tap, evoked potentials etc...I don't think you're crazy.  You have measurable diagnostic abnormalities as listed in your post.

[Lorielle]

I don't know much about any of this and your wording is so medical, I didn't understand most of it, so keep that in mind, but the only thing it sounded familiar to me was MS.  I've known a few people with it and it sounds like some of their symptoms.  Not necessarily the aura things.  So, maybe you have two different things going on.  Maybe we're not supposed to recommend anything on here, but I know of one lady who had MS, and says she felt like it completely subsided after she got on a certain powdered/mix with water nutritional supplement.  maybe you should ask around, I know many people have heard of it.  Since the doctors can't seem to help you, maybe that will.  Good luck to you.