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Old 07-28-2016, 10:51 AM #11
MAT52 MAT52 is offline
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Originally Posted by LouLou1978 View Post
Hi Mat,

There was a lady on here a while back who lived in Scotland, she had PN for 8 years, her local neuro referred her to Hammersmith Hospital in London, it was advised that she try IVIG by the professor there. I believe she has this every 3 weeks in Scotland and it helps.
Thanks Loulou. I believe this same person was the one who told me about this Neurotalk forum when we were both on the Arthritis Care forum. I will just have to wait and see how I get on with the Dundee rheumy I think. Many thanks.
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Old 07-28-2016, 10:58 AM #12
MAT52 MAT52 is offline
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Would you mind explaining what the lip burning feels like? Is it directly on the lips? Does it feel like they are windburned? Do you feel like you need to lick them?
Well it feels as if they are wind burned yes and I do lick a lot - especially since my lip biopsy. But my gums are the most annoying/ distressing because they feel as if they are swollen and my top teeth and nostrils feel as if I'm wearing an upper jaw brace that's just been tightened at the front. It's very weird! Sometimes it feels as if I've eaten a mouth full of stinging nettles - same for hands and feet - but more hands and finger tips. When I have flares it feels like the whole of my peripheries and mouth has been dipped in sulphuric acid but most of the time it's just space dust/ paprika! Hope this helps?
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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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Old 07-31-2016, 09:06 AM #13
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Originally Posted by MAT52 View Post
Well it feels as if they are wind burned yes and I do lick a lot - especially since my lip biopsy. But my gums are the most annoying/ distressing because they feel as if they are swollen and my top teeth and nostrils feel as if I'm wearing an upper jaw brace that's just been tightened at the front. It's very weird! Sometimes it feels as if I've eaten a mouth full of stinging nettles - same for hands and feet - but more hands and finger tips. When I have flares it feels like the whole of my peripheries and mouth has been dipped in sulphuric acid but most of the time it's just space dust/ paprika! Hope this helps?
persistent mouth pain, gum and lip issues might signal a deficiency of biotin:

Biotin Deficiency Can Be Fatal | Suzy Cohen, RPh

dose would be 7 to 10mg a day. Already the MS community is discussing new information for high dose biotin for themselves, and their doses are even much higher.
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