What Should I Do Next?

Question:
I have a 3 year history of on and off facial drooping. Tingling, twitching, numbness and tremors in my face and in my hand and legs. I get severe tremors in my head, severe fatigue and issues with concentration. I just recently have had an onset of what looks like seizures but I'm fully conscious during them and the EEG didn't show anything. My right leg is now buckling and my leg is dragging. Both legs feel heavy and ache. I have to use a cane to be able to walk and I'm almost needing to use two canes. I've had multiple MRIs, EEGs, evoked potentials test and of course blood work all of which were normal. My neurologist has no idea what I have and I believe that I have MS. My question is does this sound like possible MS or is it really something else? Just FYI I also have hydrocephalus, mixed connective tissue disease, Crohn's Disease and Postural Orthorstatic Tachycardia Syndrome (POTS). Please give me some ideas what to do next. My doctors and I are at a loss and they keep looking at movement disorders which don't seem to fit my symptoms quite right.


Answer:
I can understand your doctor’s difficulty understanding the cause of your symptoms. The main problem is that your symptoms do not suggest any single diagnosis and I would require further information and a detailed examination to arrive at an opinion. If your symptoms have been present for a long time, then MS is certainly unlikely. It sounds like it may be time for another opinion. I would ask your physicians for a one time referral to another really good general neurologist.


Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Center