Long Term Mild GBS
January 13, 2019 at 5:42 pm
Anyone out there with long term GBS? I was diagnosed in 2008 and have permanent nerve damage in hands and feet.
January 14, 2019 at 9:56 pm
GBS is almost always a single event and does not return after its normal 4-6 week run. The recurrent form (RGBS) is very rare (1-3% incidence rate) but is not known to last much more than a year. If your condition has seen flare-ups after a year or more from onset of GBS, most Doctors would diagnose the condition as CIDP, or possibly one of its variants (AMAN, MMN, etc.).
I was stricken by GBS/CIDP/MFS in 2008. It left me with permanent nerve damage and I’m still wheelchair-bound today. The long-term prognosis for CIDP patients can vary greatly and is summarized in the following study:
January 24, 2019 at 12:01 pm
I was diagnosed with GBS in the Spring of 2015. The burning/tingling remains but is usually under control by using 600 mg Gabapentin daily. Fatigue remains but other than that no other problems. I broke my arm at Christmas and had surgery to insert a plate for the breakage. During recovery the GBS Monster has began to visit me again. I’ve had to double my dosage even while taking tramadol for pain. My worries of course is that I’ll have another onset of full blown GBS. Really difficult to find a doctor who has any answers. Any thoughts on this dilemma?
January 24, 2019 at 12:14 pm
sorry you are going through this – as far as I know, GBS recurring is very rare
January 24, 2019 at 1:02 pm
Diagnosis of variants seems to be difficult, and I’m wondering if that might be the case with me. Not sure if it is worth investigating as there is little treatment anyway. I can live a semi-normal life – guess it is what it is. Thanks Erik for replying to my post. :o)
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