Tremors, muscle twitches
Hello dear forum friends. I’m a newbie here and learning a lot from you all. I am AChR positive, bulbar presentation with lost voice and swallowing issues. Did 5 plasmapheresis sessions, no improvement. Did also the first 2 sessions of Rituximab (14 days apart, last one done 10 days ago), and I feel my symptoms are worsening. I am now on mestinon 60 mg 3 /day plus prednisone 20 mg. Has anyone experienced their fingers shaking? Any muscles twitches? I have twitches all over my body and my fingers and my toes sometimes move on their own… thank you for any sharing.
Quinine for cramps; magnesium helps as well.
Quinine and magnesium are both known to be possible triggers for MG. Have you ever noticed any worsening of symptoms while using them? Best wishes 😀 Jodi, Team Member
no, no! Not a good idea.
They both can *cause* cramps and twitches and whatever in MG people.
I feel your pain. When I'm having a flare the right side of my body goes absolutely flaccid. Right leg with foot drop severe arm weakness and horrible right-sided face droop. My husband also tells me I slur my words. I thought twitching in my legs with something else until reading your experience. It's just awful. You're not able to control it or make it better. I have found that taking in a warm, not hot, shower helps more than anything. The problem is showering and drying myself is just murder. I feel like I've had a workout afterwards. I'm just super weak. I've just started back on methotrexate a week or so ago. I'm hoping to see a decrease in symptoms within 6 to 8 weeks. That may be a bit early but I'm hoping. I hope you find something to alleviate the twitching as well.
By any chance do you have RLS? I hope not as it can aggravate you to pieces. Talk about unwanted twitching, oh my.
So, all I can do is send wishes and kindness do you. I hope you feel better soonAnother rider!
Horses were my life too. I opened a small boarding stable in Florida and I guess the heat brought out the flares. I eventually had to sell the place at bargain basement price (end of the housing bubble)and move to Oklahoma where my son and his family are. I haven’t smelled a horse or barn since. Does that bother me? Writing this about had me in tears, but most of the time I stuff it.
I hope your MRI comes out clean and it’s arthritis, and the pain subsides. Hang in there! Peace and gentle hugs!
SueSue, I can only imagine how difficult it must be to leave behind a place with so much meaning for you. Feeling a sense of loss is entirely understandable, as is having waves of emotions hit you. How come you have yet to interact with a horse since your move? If your physical limitations are getting in the way, you may be interested in the following programs in Oklahoma: https://hrranch.org/programs/, https://turningpointriding.org/. Jodi, Team Member
I have twitching by eyes always afraid it’s a stroke. A.so now I get muscle cramps at nite. Drs aren’t worried about it. Always afraid the crisis is coming back ugh! Still on mestion and finally lower steriods to 10 mg trying to get off. Now I have 2 fractures in my spine they think it’s the steriods. Hate this disease we never know what’s next! Oh yea and effecting my bladder ugh Mestinon causes urinary issues. Urgency and overactive bladder.
Hi I have tremors in my right hand every time I try to hold something. But I’m not sure if it’s familial tremors that run in the family or related to the MG. They have seemed to get worse but it was there somewhat before my diagnosis.
I take a lot of the mestonin, 6 pills/day 60MG each. Plus 3 Glycopyrrolate and 50mg of prednisone. My eyes give me so much trouble, I feel like they’re almost swollen shut, vision is not clear and my swallowing and breathing are off. I have to be careful with everything. I sleep sitting up. Sometimes I try to lie on my side but find myself waking up struggling. So I don’t get a lot of sleep.
I’m not sure if the amount of meds I’m on has anything to do with the shakes I’m having.
I’ll ask my doctor.
Denise
