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Old 07-30-2015, 03:50 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
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Quote:
Originally Posted by en bloc View Post
That is the best site I've seen for this! Thanks, MrsD.

But you have to have BOTH serum & CSF results, Mat. Did he run serum labs also...and if so, do they show the same?
Yes I agree it's an excellent site thanks mrs D.

Enbloc my neuro had both serum and Lumbar Puncture done at same time for this purpose. This is why he says I have "paired O bands" - because the bands in my CSF are paired exactly with those in my serum. This is why my GP, rheumy and neuro all say I have rheumatic disease - even though my RA symptoms have gone into hiding.

And presumably this is why I'm not told it's idiopathic or Fibromyalgia or ME. Although I'm asking here because until this last hospital admission no one had explained that this doesn't only rule out MS - it also means something systemic is indicated.

So they know something is going on but just not yet sure exactly what so for now it's called RA rather than Lupus or a type of Vasculitis - because my ANA and ANCA are both negative and I did present with clear synovitis for a few years and have a fluctuating ESR and CRP and raised rheumatoid factor.

But the fact that most of my diverse symptoms are systemic and appear as neurological first and foremost, now baffles everyone. It also means I don't get anymore treatment options until it shows itself, or disappears.
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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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