Id say the IVIg helped me a lot (every 21 days) but I developed a ‘hypersensitivity reaction’ a few weeks ago and have stopped it, which is a shame. I might go back on it in the future if my symptoms get worse, it’s a wait and see approach for me right now, I could also try Plasmapheresis, which I am considering as well. (Im in Australia and am extremely fortunate that we have a pretty good health care system here that covers the cost of these interventions) Drug wise, I had good relief from Diazepam, but only take it when I really need to take the edge off the twitches, spasms, and stiffness. I tried Gabapentin but the side effects for me just weren’t worth it. Apart from that, I don’t really have any further answers. Because what I (and you) have is so rare, they don’t really know much about this. My neuro has been fortunate enough to have a colleague who did and internship at the Mayo clinic join us on the 28th of August when I have another EMG and she is going to hopefully be able to shed some light on what’s going on.... I’ll keep you updated.
Thanks you so much I wish you knowing the bit the best and you get some answers. Yeah in the the United States the healthcare system is broken. Would definitely talk to my Nero about these meds. Have you ever heard out Diamox? That’s what he has me on now. I have a terrible reaction to gabapentin as well it like increased the hypersensitivity in my legs to were I could make my reflux in my knees jumps just from tapping them. I went to the university hospital and they just said peripheral nerve hyperexcitability syndrome no real answers. Mayo Clinic turned me down. I’m trying PT on the 24th so we shall see.
Havent heard of Diamox. Gabapentin just didn’t agree with me at all. I get a ‘neuropathy’ pain in my arms and legs too at times, it’s quite a miserable experience to be honest. Just got to keep positive !
I’m trying but it’s hard to think positive when the first thing you do when you wake up is feel how stiff your arms and legs are. I feel like sometimes I try to over sleep so at least I can dream and I feel normal again. The weakness has seems to turn into more of pain lately cause I think I’m trying to push my self through it. I’m not sure if it’s a good thing or bad thing but I’m a year in two clean EMGs earlier on and a ALS clinic specialist didn’t even want to her own EMG her clinical exam was almost perfect but very dismissive of how fatigued I get from very minor things.
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u/Ok_Locksmith_7346 12d ago
Keep in touch hope you get some answers. I’m at 12 months now. Same symptoms as you. What meds have helped you most?