Quote:
Originally Posted by mickeyM
rancar... are you off neurontin or whatever you took? what does did you get up to at your peak? did you ever re-biopsy to see if you got any fibers back? ever get IVig? i dont get the whole flare thing. in the little literature there is they seem to imply that Small fiber GBS should be monophasic. guess they didnt follow people long enough. hopefully the idea that each flare makes you worse off isnt true. Did you just have foot pain or full body? my thing progressed like yours... pins/needles and vibration then sunburn pain and hot toes. cold feels hot. also get weird wet sensations. im only 4 months in. i have weeks where it seems like its getting better then weeks where it gets worse. i hope it gets better down the line. have a feeling if i want ivig i may have to dig into my own pocket.
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The pain peaked at about six months and from there it slowly got better in waves, with increasing days between serious symptoms. I did not go on any special drugs other than high dose CBD which is an incredible analgesic and nerve pain reducer (go WA state
).
Mine is an auto-immune disease. They haven't diagnosed the exact one yet, but it isn't a case of acute GBS like yours may be. If yours really is acute take heart in the fact that it won't get any worse and you have a great shot of getting through this with just some bad memories.