Anyone with Myasthenia Gravis (MG) who cannot close one or both hands?

Good Morning!
In October 2021 both of my hands became stiff, swollen and unable to move…they appeared closed. The left side of my mouth drooped and I could not swallow. In trying to find out what was wrong with my hands, doctors seemed more concerned with my mouth drooping?! At first I kept hearing stroke and Bell’s palsy. I was more concerned about my hands which hurt, and not being able to swallow. Luckily, I was directed to a hand specialist, who with one glance at my gnarly hands, knew it wasn’t a hand problem. I thought he was crazy when he said nothing was wrong with my hands until he told us he thought I had a neurological or muscular issue…he ventured ALS or MS. We were devastated. He was all business and asked his nurse to call a neuro muscular diagnostic doctor. When the nurse told him I could not get in for 6 weeks he told us to go home and he would be in touch soon. By the time we reached home, he called us and had arranged for me to see the diagnostic doctor the next evening after his practice closed. We drove 1 1/2 hours to see him and we there over two hours! In 30 minutes he said that it was not ALS and we cried for joy. He then continued testing and told us he thought it was one of three things and explained in detail. When we finally got the diagnosis of MG almost seven weeks later, everyone was surprised as I didn’t fit the niche of a person who would have MG…female, 68 years, and no eye issues, et cetera. After beginning a treatment regiment in early February, 2022 I very slowly began to improve. My right hand seemed to be quite a bit better by May but my left hand is still not fully healed. Both hands are still slightly swollen and feel strange to me. Two fingers still won’t entirely straighten and the inside of my hands have what I describe as valleys. When my body temperature gets hot, water actually pools in these valleys. My wrists were incredibly weak also. My neurologist, who has been virtually no help, does not understand how devastating not being able to use hands is. I couldn’t write my name, cook, clean, or do anything for months. My biggest thrill was being able to address over 350 Christmas cards, which brings me joy. Since being diagnosed, I have met three others who have MG and none of them had hand issues. This is the first time I have heard anyone else reference the hand component.
Don’t give up hope…after almost a year of treatment (which I hesitated to begin but got reassurance through Mayo Clinic Connection), all my symptoms are greatly improved. The hands still aren’t the same but I pray they will be. Progress has been slow but hang in there. My husband still marvels at how “my claws” as he called them are now more like the beautiful hands I once had. My hands still are painful, which my neurologist insists shouldn’t hurt. Seriously?!?! Please keep us informed as to how you are doing.
Bless you🙏🏻♥️

Hello Carrie: Thank you for your very informative reply, I really appreciate it. If I had believed all the things that I was told throughout the past 31 years from all the doctors I have visited, I probably wouldn't be alive today...LOL I have learned more from doing my own research and belonging to support groups like this one over listening to the doctors.
My left hand has been swollen and so sore I could not use it for a long time, along with all my other symptoms. But, that has mostly gone away now. Thank you my good friend for all your info and your concern. Take care of yourself and drop me a line anytime. I have been home-bound for a very long time. May God bless you and your family, Carrie....Bill

@willie23 and @carrie13 I found this information that helps explain:
"Myasthenia gravis (MG) can affect any of the muscles that you control voluntarily. It can affect muscles of the face, hands, eyes, arms and legs and those muscles involved in chewing, swallowing and talking. Muscles that control breathing and neck movement also can be affected."
- What are symptoms of Myasthenia Gravis (MG)? https://www.myastheniagravis.org/about-mg/symptoms/

I'm also tagging fellow MG-ers like @pkon @ellen307 @Erinmfs @nancybe @rambo77 @skhollandmt @pmci @kiwigirl4 @chglobig @smilton @pikuptruk to share their experiences.

Bill, how did you reduce the swelling and pain in your hand? What helped?

Hello Colleen: Actually, I've only had about 25% use of my left hand since my diagnosis in 1992 with occasional mild swelling. However, this time it was swollen so tightly with so much pain I could not sleep nor get out of bed without help. My doctor had told me before to use ice-packs and over the counter medications for the inflamation. So, basically that's what I did while praying that this was not going to become permanent. My prayers were answered, at least for now. In my 31 years experience with MG I've discovered to expect anything at anytime. I realize that this is basic information, but with MG, many times that is all we have to work with. May God bless us all...Bill