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Old 04-03-2016, 03:58 PM #1
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
Tongue SFN, neurology update -BMS and Dysgeusia

Life doesn't get simpler for me in my quest for answers and treatment. My appointment with new neurologist last week wasn't productive at all. She confirmed that I just have small fibre neuropathy and this has just led to some numbness and proprioception issues. She said I look too well to have a multi system disease so feels my symptoms just relate to my RA, despite this currently being inactive. She rolled her eyes when I told her I'd seen an endocrinologist who had added Lyothyronine to my longstanding Levothyroxine.

She shrugged about the raised inflammatory markers and paired bands and said this relates to the RA probably - quite common and I'm over thinking everything. I tried to ask her about Sjogren's and Mast Cell disorders but she said I have been diagnosed in the past with a serious disease already so why look further? She had read my rheumatologist's letter saying mild RA in remission so felt this was enough to explain. She acknowledged that there is now some widesoread numbness and burning mouth syndrome but says I'm too allergic to many medications to risk further immune suppression and I refuse to try more symptom treating nerve drugs because of side effects. The numbness is for life so I need to try to get more exercise, lose weight, take up yoga and tai chi and be thankful that my RA is non erosive so far. She will see me again in six months to a year.

I was so nonplussed by her bossy and dismissive tone that I forgot to tell her about five years of bad taste coming and going all the time - making my sense of taste and smell poor. I've written to tell her this although I'm sure she will just shrug and say this is just common too - especially in a post menopausal woman.

Meanwhile, in contrast, my new GP is quite concerned about my chronic constipation, stool changes and flank discomfort plus raised inflammatory markers despite no RA. I'm being tested next week for Coeliacs, Liver and pancreas problems plus rectal exam. Not expecting anything to show up. But good to know I'm still being investigated to rule out sinister stuff. As if small fibre neuropathy and disequilibrium with burning gums and Dysgeusia wasn't sinister enough?!
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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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