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🙏🏻♥️