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Old 03-20-2015, 05:14 PM #8
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 mrsD View Post
GB is an autoimmune process... and some people can have a slower variant of it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152164/

Because it is uncommon, many physicians never see it and miss the diagnosis until the patient is in big trouble breathing.
My friend had plasmapheresis because IVIG was not available back then. She was hospitalized for 2-3 weeks and had PT for 3 months. She had just finished chemo and surgery for breast cancer, and about 2 months while recovering got a virus. She was in her early 40's then. I watched with horror as she became weaker and weaker and I called her husband who was in Wash.DC and he rushed home and took over-- deciding to put her in the hospital.

If they don't put you in the hospital, I'd try to elevate your head/chest off the bed so you can breathe more easily.
Just to update people who helped me earlier this week. I saw my rheumatologist yesterday and he surprised me by conceding I have a multisystem autoimmune disease rather than simply non erosive RA as he said previously. I'm going to start a new immune suppressant drug as soon as my chest infection clears up. Saw GP again this morning who has added in a second antibiotic because he can still hear loud crackling on the corner of my lung. He feels that the small fiber neuropathy is most probably a part of my dodgy immune system. The drug I am to try next is Imuran / Azathioprine. The GP says he won't let me take it until I'm 100% better. Had a chest X-ray done afterwards but not heard anything about it yet. Mat
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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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