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Old 03-10-2015, 06:46 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by en bloc View Post
I would at least inquire why he would only take one biopsy and if they will do another one if the results are positive. There is NO way to differentiate between length and non- length dependent SFN with just one biopsy location.

What autonomic symptoms are you having? Any chance you can get them to do an autonomic battery?
I have just risked offending him by asking him about all this - quoting you on length dependency. I'm not getting this procedure done by him just to tick their NHS quality performance framework boxes and save them money -no way. I work as a volunteer supporting the NHS sbd public services but not donating tiny bits of my DNA to medical science if there's no gain for me and mine.

I tried to ask with charm and humour but if he blows a gasket with me in response then so be it. Almost enjoying the idea of a stand up row about how well he is remunerated to cut little bits off me and he's only going to do it if I'm reassured about your points. One calf only and one biopsy only isn't going to cut the mustard with me. My body - my SNF - my sanity all depend on feeling able to trust these people to have my interest at heart. Hopefully he will imagine bashing me over the head tk with a stick but will actually grin and say "of course I had planned to take several biopsies Mat" I am not just anither QOF (quality permanance indicator) for these doctors and will not be experimented on gratuitously just to save the NHS a few hundred pounds!

Re autonomic stuff - could easily be flu - sweating profusely or not sweatjng at all. Upper GI issues, respiration trouble with a dry cough, pain I chest wall/ ribs- dry eyes, dry nose, sores/ crusts and bleeds, earache, tinnitus, dizziness, jaw pain, no sense of taste or smell anymore, vaginal numbness, absence of sweating for months followed by nighttime drenching. Heart arhhythmia and . To be fair I think a lot may be stress related and I don't think its good to find a disease and get symptoms to fit so I'm trying to keep an open mind. But GPA/ Wegegers granulamatodis woukd tarry with many of my symptoms I admit!
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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