Last Thursday, 5/26/16, I saw my neurologist for the first time. I was referred due to loss of strength and dexterity in my left hand. My family referred me thinking it might be carpal tunnel even though it didn't present like the normal carpal tunnel. After testing with the electrodes and the needle in the different muscle groups, she told me that I have a rare myopathy. It's very slow progressing and there is no cure. She said that I have to have more testing to determine which one I have and sent me for lab work and warned me that I will probably have to have genetic testing done. Then she would have to refer me to another specialist.
Even with me working in the medical field, I didn't really understand what a myopathy was. Not till I got home and researched it anyways.
As far as I can tell, I have a distal myopathy. I think it could be Welander's Distal Myopathy. My symptoms started in my mid-forties (I just turned 50 last month). Right now, it's my left hand (non-dominant) I can no longer grab or carry bags or pull patients with that hand. And in the last couple of months, I'm experiencing a slight weakness in my left ankle. Unfortunately, information is very limited on this distal myopathy.
Who knows, I could be wrong. But this is the one my symptoms fit into so far. Does anyone know how long it takes to get a correct diagnosis? Any help is appreciated.
Posted on 05/28/16, 11:22 pm
Even with me working in the medical field, I didn't really understand what a myopathy was. Not till I got home and researched it anyways.
As far as I can tell, I have a distal myopathy. I think it could be Welander's Distal Myopathy. My symptoms started in my mid-forties (I just turned 50 last month). Right now, it's my left hand (non-dominant) I can no longer grab or carry bags or pull patients with that hand. And in the last couple of months, I'm experiencing a slight weakness in my left ankle. Unfortunately, information is very limited on this distal myopathy.
Who knows, I could be wrong. But this is the one my symptoms fit into so far. Does anyone know how long it takes to get a correct diagnosis? Any help is appreciated.
Posted on 05/28/16, 11:22 pm
rickysneaks
Results can very. I had my first symptoms when I was 16; I'm 33 now. But, the advancements are incredible. I received my formal diagnosis of Limb Girdles Muscular Dystrophy type 2L last year. As crappy as life is, it made me feel so much better to at least have a diagnosis. You should always check www.clinicaltrials.gov. It's a good way to keep up with the times. Also, never give up. Don't let anything or anyone keep you down. The answers are out there. I'm sure you will get a diagnosis. It always boils down to how much money you want to spend, and how proactive you are in seeking that answer. Never rely on anyone other than yourself on accomplishing goals. Good luck. I'll be in touch.
radiumgirl
Thank you! I have an appointment with a neuromuscular neurologist at the MD clinic in San Antonio August 16th. Definitely can't go out of network with my insurance, I found that out so far. Now, at 50, I'm reevaluating my life and deciding what changes need to be made. I've already started going to the gym and have a personal trainer to help strengthen what I have, and I'm actually entertaining the idea of early retirement.
joe21
I am still undiagnosed and it's been 5 years....Hopefully you found some answers. I'm struggling right now gaining weight and it makes life a lot more difficult when you put on some extra pounds. Just reaching out to see how other people are dealing with this.
Join the Conversation