Reply To: Joint Laxity and GBS

August 14, 2017 at 5:17 pm

Full blown symptoms out of nowhere late in 2015 although looking back there were indications like changes when riding exercise bike, small balance things, crawly skin sensations, some mild tingly in fingers etc. which Drs dismissed as those weird things that bodies do.

DXed in early 2016. Not doing as good as I was the first 6 months after IG TX started, better than I was 6 months ago with significant relapse over 4 days, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.

Im a tad over 18 months in and it took multiple neurologists to get a DX. Id suggest finding one with some background/experience in neuromuscular disorders.

So I hope this is still a recovery phase because if its my new normal, its going to stink. Legs are weak and unable to generate power like used to, arms too. Some gross and fine motor skills are back, but others are still not completely right.

Each 6 months or so IG seems to lose effectiveness and we shorten time frames between or bump up the dose. Can only do so much of that though.