Thank you for your note, glenntaj. This is why I've been trying to convince my neurologist to investigate my symptoms more than he has. I'm now trying to find a new neurologist.

After the SFN diagnosis, and even before, my comments about such symptoms as shaking, tremors, or whatever you'd like to call, and well as fasciculations were mostly ignored. This is likely because nothing showed up on the EMG on three occasions. I'm not sure if that's because the large fiber involvement is so minimal that it's not picked up, or because there is CNS involvement. I do have some minor memory and cognitive issues, including slow processing at times, but that may be due to psychological affects arising from my terrible situation. If you have any ideas/thoughts here, I'd very much appreciate them.

At this point I've lost any real hope of finding the cause and of stopping the progression of my disease. But I will try to see some new physicians and see what, if anything, can be done.

Thanks again for your input.

Sorry I never responded but my alerts for NeuroTalk don’t seem to work. I feel very similarly DavidHC, regarding expectations of ever stopping this thing - or rather this mutipilicty of symptoms. I can’t fathom how we both end up with symptoms that appear to go beyond SFN, but don’t show up in testing for CNS/ large fibre involvement.

I’ve just seen my vascular doctor at connective tissue disease clinic and he is retesting my brain and cervical spine for progress of small vessel disease/ white matter/ cerebral vasculitis. Although this wouldn’t explain my main peripheral symptoms it could explain my issues with standing, mildly ataxic gait and disorientation in certain environments. And I think he feels that the other stuff might be some sort of small vessel vasculitis too.

Like you I have lost faith in my neuro - particularly since she described my pursuit of answers to explain my debilitating symptoms as “heightened heath awareness” - lol. I wrote her a very assertive letter calling each nonsensical point she made and I’m awaiting some sort of response. Meanwhile my GP has referred me back to neurology for a second opinion. But as my reflexes are “brisk” I don’t expect much to come of this or of the next neuro, my third to date. But the vascular doctor is very thorough and knowledgeable at least.

Thank you for writing. I do hope you get to the bottom of this, or closer, which it seems you're doing. It's so difficult working with these physicians and good ones are so rare. I had a good one, relatively speaking, but he is no longer accessible to me as he left the country. I've dealt with some bad ones, but I've never had to go to the extremes you have. Good for you for fighting back.

I will see whether the next one can help me. I'm not too hopeful. But perhaps I will have then rerun some of the tests to see if there is large fiber or CNS involvement now.

Best of luck to you!