[Synnove]

Hello. I have not been told by any of the doctors that I have seen what the reason for my neuropathy is. 1 1/2 year ago I had my first MRI of brain. It showed multiple demyelating lesion suggestive of MS. But so far, a general neurologist and 2 MS neurologists have not diagnosed me, nor ruled it out. I have since been diagnosed with leucocytoclastic vasculitis and being seen by a rheumatologist. The intense burning, all over started 1 year ago, and has been getting worse, much more intense. It now involves everything, all body parts, mucous membranes included. It is only sensory, not involving motor functions. When I ask, they say, it could be due to a number of reasons.
I took fairly high doses of Neurontin which did help, but I always had periodes of brake throug pain. Now I take Lyrica with much better relief.
It was the rheumatologist that prescribed it She also put me on Plaquinil for vasculitis. My legs and arms get bluish skin some times.
My neurovascular doctor has referred me to a neurologist who specializes in neuropathy., He is a professor at the university hospital here. I hope he can do a punch skin biopsy for nerve study. I find that there is very poor communications between doctors. For example, my neurologist who I origionally have been seeing due to cerebral aneurysm, always refer to the vasculitis as "questionable." Then he will not order a spinal tap( mostly due to I am on blood thinners) But now, he has decrease the Plavix to slowly come off it over a periode of 4 weeks. Hope fully I can have a spinal tap to possibly find out what the reason for this systemic possibly fine fiber neuropathy is. I think, if it is not due to vasculitis, eighter just leucocytoclastic or systemic, it must be MS. Both of these conditions, I understan, can cause demyelating lesion in the brain. I have tested negative for sjogren"s twice, and negative blood test for scleroderma As a matter of fact, most blood tests are negative, no specific antibodies, except for positive ANA on and off. I am waiting for answers. I guess, the doctors do not know.