Quote:
Originally Posted by LouLou1978
Hello there,
For those of you who don't know my story, i have had symptoms of SFN from the end of 2012. I was 36 at the time, symptoms (not painful) but buzzing and funny feelings. Fast forward to 2014 when i saw a really good neuro who suggested this could be Non length dependent SFN. He sent me to London for a skin biopsy. The skin biopsy revealed increased nerve fibers, (which I have been told is very unusual). Neuro told me 80% of SFN suffers have reduced nerve fibers. He only sees about 20% with this presentation. It was indicated in the professor's letter who done the skin biopsy this was inflammation.
While i was completely stressed out about being told i had SFN within days the pain was horrific all over my body. My scalp was the worst. After a couple of months the pain subsided, I calmed down a bit and pain almost went away. I have been in this position since the end of 2014 but i am now getting sharp pains down below and also i have had burning tongue and lips. I didn't have pain in these places when i had the all over burning. It was everywhere else. However i had always had buzzing all over my body.
My last appointment with my neuro went well, he suggested that i may have had some sort of Virus which attacked all the nerves in one go, and the pain i get from time to time is just old nerve damage . He mentioned possible Sensory Guillian Barre.
I'm in the UK and have been offered a trial of IVIG, i have tried 5 days of iv steroids last year which didn't seem to make any different to the the symptoms . My next appointment is not until October. I am wondering what to do, as my biopsy was unusual and my symptoms are strange, as the full body burning has gone away but i seem to get pain in places i never had before. Any ideas?
I am wondering if i should go for the IVIG......
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Hi LouLou. I haven't had the proper biopsy for SFN - just a rather homemade one taken by my island GP last year and sent off to Edinburgh - showed nothing at all - but whether GP conducted punch biopsy from the right part of my calf I really don't know!
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.
