FAQ/Help |
Calendar |
Search |
Today's Posts |
|
07-19-2016, 09:13 AM | #1 | ||
|
|||
Member
|
Quote:
The only things that have appeared for me have been raised to high levels of inflammation in my blood and same from spinal fluid in the form of paired oligloconal bands. Recently my ANA was found to be a clear positive and elevated IgG and IgA as well as elevated Red Blood Cells (my normal). This is why I'm hoping that the lip biopsy shows up positive for Sjogrens as it would explain a lot and perhaps lead to further treatment options. However my mouth and eyes aren't especially dry so I'm not expecting too much from the results. If I was offered IViG I'd most definitely try it. I've asked my previous neuro several times but been told that my SFN has not been confirmed as immune mediated. If your results show that yours had I really would grab the treatment option myself. I too have the burning gums and lips - the most annoying aspect of SFN because it's oral and therefore affects our lives adversely day in day out. My sister has it too but hers is in the roof of her mouth and tongue. She's had it for two years - along with very bad back - but is none the wiser.
__________________
If you get lemons, make lemonade 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 |
||
Reply With Quote |
"Thanks for this!" says: | ElaineD (07-21-2016) |
07-21-2016, 06:13 AM | #2 | ||
|
|||
Member
|
Quote:
Last edited by LouLou1978; 07-21-2016 at 06:15 AM. Reason: Spelling |
||
Reply With Quote |
"Thanks for this!" says: | ElaineD (07-21-2016) |
07-21-2016, 10:31 AM | #3 | ||
|
|||
Member
|
Quote:
__________________
If you get lemons, make lemonade 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 |
||
Reply With Quote |
07-25-2016, 01:36 AM | #4 | ||
|
|||
Member
|
Quote:
|
||
Reply With Quote |
07-27-2016, 06:19 AM | #5 | ||
|
|||
Member
|
Quote:
__________________
If you get lemons, make lemonade 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 |
||
Reply With Quote |
07-28-2016, 09:11 AM | #6 | ||
|
|||
Member
|
Quote:
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. |
||
Reply With Quote |
07-28-2016, 10:51 AM | #7 | ||
|
|||
Member
|
Quote:
__________________
If you get lemons, make lemonade 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 |
||
Reply With Quote |
07-28-2016, 06:59 AM | #8 | ||
|
|||
Member
|
Quote:
|
||
Reply With Quote |
07-28-2016, 10:58 AM | #9 | ||
|
|||
Member
|
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?
__________________
If you get lemons, make lemonade 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 |
||
Reply With Quote |
07-31-2016, 09:06 AM | #10 | |||
|
||||
Wisest Elder Ever
|
Quote:
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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Causes for progression of PN | Peripheral Neuropathy | |||
Progression of PD or something else? | Parkinson's Disease | |||
Progression | Multiple Sclerosis | |||
About PD progression... ? | Parkinson's Disease | |||
Is this progression? | Multiple Sclerosis |