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!
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Originally Posted by MAT52
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.  |