Quote:
Originally Posted by MAT52
Yes I reckoned you’d have something pertinent to say about the lack of skin biopsy evidence in this context! And I fully agree although I feel that, by stalling on this for years now, they may not be keen to perform this in my hospital’s neurology department. But I’m only seeing a registrar initially (is this what you call an intern perhaps?) ie someone not yet actually fully qualified to do more than pave the way for the specialist. But perhaps this will at last include the official SFN testing at last?
Then the neurologist will probably see me herself (I think I’ve got another woman neuro - hopefully less sarcastic and more up to scratch on Sjögren’s SFN) in a few more months with results of tests. The ever growing cynic in me says that this is just the NHS hospital buying time so that they can say it’s all damage done and no point in treating my SFN as it’s gone as far as it’s likely to - bearing in mind that I’m fairly numb everywhere now.
It also occurs to me that, if nothing shows up again with skin biopsies, then it’s likely that they will discharge me with Functional Neurological Disorder or Fibromyalgia secondary to my SS - which is a daunting prospect I admit. X
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You have mentioned the fear of it coming back negative before. This isn't a bad thing if it does. I don't think they will dismiss anything...I think they will just confirm that your spine is the problem, not SFN. You really need to know which it is. If biopsy is positive, it is both. If negative, it's just the spine...how is that bad? Frankly, that tells you how bad the cervical spine really is. Hanging on to the 'presumed' SFN with no confirmation at all, is only adding to the problem of no answers. If it IS the cervical spine, instead of SFN, then something at least may be done to fix it. They never looked beyond the 'presumption'...so they could have dealt with this a couple years ago had someone not presumed anything and stuck with facts and proof of a proper biopsy.
I bet you have both...at the very least, damage to the nerves...even if density is within normal range. But I doubt it is...and I think yours is non-length dependent (which requires at least 2 sites to confirm).