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Old 03-29-2015, 06:10 AM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Question The Shapeshifter AI disease

Mine has been around forever in different guises. I believe the trigger for me was when my mum inadvertantly starved me as a baby by not breastfeeding me on demand. I almost died - about 24 hours off I was told. I think this sent my body into fight or flight.

So thoughout my life I've suffered from eczema, alopecia - first 45 years - then this went and was replaced by RA and latterly small fiber neuropathy - probably as part of the package. I have Hashimito's Hypothyroidism - diagnosed about 14 years ago now but could have been around for much longer I'm guessing.

My symptoms seem to completely change on a regular basis so that the diagnosis of seronegative RA has come to include my present symptoms - nose bleeds and sores for a few years have gone over the past few weeks but I have jaw ache, pneumonia, loss of taste and complete absence of smell. The painful neuropathy lasted about two years alongside the synovial joint pain and then on it's own. I haven't tolerated any drugs apart from Levothyroxine, Codeine, Naproxen and Zopiclone to date. I am to start Imuran once I'm well enough - having tried and failed to tolerate Sulfasalazine (3 weeks), Methotrexate (2 years) and Hydroxichloraquine (18 months) so far. Also Amitriptyline, Gaberpentin and Duloxetine have all been and gone.

I just wondered if anyone else has a radically shapeshifting type of autoimmunity? I can get used to one set of symptoms and just about manage them but then I get another lot arrive and am completely floored. I just don't know whether I'm coming or going and nor does my rheumatologist - who is an old fashioned arthritis type of guy - very cautious by nature. My GPs (I'm in Scotland) seem to put each symptom down to something very normal such as gastritis, or just nose bleeds, just stress headaches, just a virus (pneumonia), just idiopathic small fiber neuropathy, just Raynaud's and just Sicca, just TMJ, just Morton's Neuromas etc.

No one seems to be joining up the dots. I have a neurologist, a rheumatologist and am soon to see a general surgeon about my longstanding GI problems. The rheumatologist thinks everything is probably under the loose umbrella of RA/ Rheumatoid Disease. The rheumy sticks with RA because when I first presented my knuckles and finger joints were swollen in classic fashion. Now this is no longer the case - I seem to have much more trouble with osteoarthritis in my finger joints than with RA. Nerve pain (stocking glove distribution) is a much bigger issue still for me than joint pain. I have had lumbar puncture, nerve conduction, MRI of brain and neck and nothing apart from arthritis has shown up. I am autoantibody equivocal with negative ANA.

Personally I think I have a type of Vasculitis (Wegener's) but because I have no skin manifestations they have never investigated this possiblity. Perhaps it doesn't matter if I'm going to try Imuran soon?

I would be interested to know if others have a shapeshifting autoimmunity of this nature. I'm not good with change and find it very hard to settle or come to terms with a disease which keeps chopping and changing so totally all the time.
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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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