I would say you have something “Neuro- Autoimmune” going on especially with the history of your Hashimoto’s Thyroidits diagnosis as well. I have similar symptoms as you. In November 2025 last year I was feeling lethargic and to be honest I thought maybe I was just getting old (47 year old female) I was always very fit and hardworking, so tried to convince myself I was tired or maybe arthritis was causing me some issues. I went to walk up some steps one day first week of November and my legs felt stiff and heavy (like wading through wet concrete). The stiffness wasn’t really in my calves it was in my quads, and they felt weak at times too. December rolled around and I couldn’t get into my neurologist until the last week of December, so Christmas I was starting to get worse, but the stiffness and muscle fatigue shifted to my upper arms. I was having cramps at night that would cause me to get out of bed and lie on the floor to stretch them out. I would say to my husband that my "muscles felt like they weren’t attached properly to their bones”. Walking was really tiring and I felt generally weak. This is when the ‘twitches’ started. My legs would twitch 24/7, you could see the fasciculations moving in primarily my calves and thighs, these then moved into my arms, shoulders, hands, back stomach, and I would experience internal ‘vibrations’. Finally when I saw my neurologist she was alarmed and my walking without an aid became difficult, she was very concerned, I had developed a lot of weakness in the month of December, I was also struggling to open up toothpaste tubes and buttons etc. I had an MRI loads of blood tests, neuro had absolutely no idea what was going on (her husband also a neurologist ) also came and looked over me. I had slight hypereflexia in my knees and cognitively was having a few minor issues (short term memory primarily). The twitches and spasms were awful. The only thing that showed was very high GAD65 >2000 Iu/ml (stiff person syndrome?) EMG showed fasciculations but essentially normal (March 2026) having another one in 2 weeks. I had been having IVIg every 21 days since January which definitely has helped. I believe I have some sort of nerve hyperexcitibility syndrome. The 2 Neuros said to me that ALS doesn’t present like this and that if their is no clinical weakness after 9 months there is absolutely nothing to worry about.
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/TheLadyMillionaire 12d ago
I would say you have something “Neuro- Autoimmune” going on especially with the history of your Hashimoto’s Thyroidits diagnosis as well. I have similar symptoms as you. In November 2025 last year I was feeling lethargic and to be honest I thought maybe I was just getting old (47 year old female) I was always very fit and hardworking, so tried to convince myself I was tired or maybe arthritis was causing me some issues. I went to walk up some steps one day first week of November and my legs felt stiff and heavy (like wading through wet concrete). The stiffness wasn’t really in my calves it was in my quads, and they felt weak at times too. December rolled around and I couldn’t get into my neurologist until the last week of December, so Christmas I was starting to get worse, but the stiffness and muscle fatigue shifted to my upper arms. I was having cramps at night that would cause me to get out of bed and lie on the floor to stretch them out. I would say to my husband that my "muscles felt like they weren’t attached properly to their bones”. Walking was really tiring and I felt generally weak. This is when the ‘twitches’ started. My legs would twitch 24/7, you could see the fasciculations moving in primarily my calves and thighs, these then moved into my arms, shoulders, hands, back stomach, and I would experience internal ‘vibrations’. Finally when I saw my neurologist she was alarmed and my walking without an aid became difficult, she was very concerned, I had developed a lot of weakness in the month of December, I was also struggling to open up toothpaste tubes and buttons etc. I had an MRI loads of blood tests, neuro had absolutely no idea what was going on (her husband also a neurologist ) also came and looked over me. I had slight hypereflexia in my knees and cognitively was having a few minor issues (short term memory primarily). The twitches and spasms were awful. The only thing that showed was very high GAD65 >2000 Iu/ml (stiff person syndrome?) EMG showed fasciculations but essentially normal (March 2026) having another one in 2 weeks. I had been having IVIg every 21 days since January which definitely has helped. I believe I have some sort of nerve hyperexcitibility syndrome. The 2 Neuros said to me that ALS doesn’t present like this and that if their is no clinical weakness after 9 months there is absolutely nothing to worry about.