Originally Posted by gailveronica

An update:

I've been seeing a specialist at Strong Memorial Hospital in Rochester, NY. She's very thorough and went through a lot of questions / answers with me before recommending me for yet another NCS / EMG with a neuromuscular specialist. The recommendation came in June, the appointment was this past Friday. Because my symptoms are so odd, and my previous EMG did not show much of anything, after the Nerve Conduction proved to be normal, the neuromuscular physician offered another option, aside from the EMG (which he didn't expect to show anything for my sensory symptoms) - an ultrasound of the nerves. Now, because of the small size of the sural nerve, and the rarity of it being affected, no true conclusions were made. However, they did note a small size difference (30% larger in left leg than right) which suggests inflammation.

Because of this, my neurologist called me yesterday and said that she thinks I have sensitive nerves due to my PCOS / B12 deficiency (that I had at one point) and any nerves close to the surface (such as the sural nerve), once irritated, may stay irritated for quite some time. She is not recommending a skin punch biopsy to look for small fiber involvement. She, along with the neuromuscular specialist, believe that further testing is no longer warranted.

I suppose this is something I will be able to live with, though I'm starting to get more pain in my big toe, and now in the ankle of my left foot. But nothing is symmetrical, nothing is super spread, it's all very pin-pointed and nothing is keeping me from performing daily tasks. Pain, numbness... I guess I'm at the end of the road? Including these 2 specialists, I've also seen a rheumatologist and another neurologist, all who appear unconcerned. Initially the concern was MS, but since that's been ruled out, any other concerns seem to surround pain management rather than finding a cause. Is this all there is? I suppose time will tell.