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Hi I was just giving up hope that I wouldn’t find someone similar to my disease. I haven’t logged in for sometime as no one seems to know what to say. I was gonna unsubscribe until I saw your message🥰
I have been to the MDA facility where I live but the doctor dismissed me because apparently I wasn’t as bad as the people who have Myotonia Dystrophy. I explained to him that walking is a issue, I have been losing my balance and chronic pain. I was so upset with him that I cried on my way home.
The Neurologist I have at the Mayo has been Wonderful but there is only so much he can do as I cannot be there on continually as they are 4 hours away. None of my doctors here at home don’t know anything about this but trying to help through the advice of the Mayo. I saw one doctor here that is well adverse in Myotonia but she wouldn’t test me but diagnosed me with Myotonia Dystrophy type 2. That’s when I went to the Mayo and did 3 genetic tests. Which 2 proved MC and ruled out Myotonia Dystrophy. I have been on most of the convulsion medications and allergic to them but the Gabapentin which seems to work a little but I still have severe pain in my thighs.
I am so glad that you responded hopefully we can talk again😊
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Hello:
I totally understand how frustrating and sometimes feeling like there isn't anyone that will listen creeps in. I understand your frustration with getting down to what the problem actually is.
Before I was diagnosed with MD 2, I didn't think a lot of the symptoms and we thought it was tied to parknosinism. My first weird thing that happened its when driving (which I am not allowed to do anymore ) I tried to let go of the steering wheel and my grip didn't release very well - grip myotonia. Then I noticed a trend in my bloodwork. I noticed a constant rise of CK levels over a 2 year period. When I questioned this an appointment I was immediately made to have further testing which came back as abnormal with suspected MD 2. Genetic testing confirmed.
I think I know the answer but I need to mention it anyway. have you looked at the mda website?- You can locate mda clinics and can find some info on docs.
https://www.mda.org/care/mda-care-centers
Another great source of info: https://www.myotonic.org/muscle-cdm
If you don't mind me asking - which Mayo do you go to?
Stay positive.
Smile - they will wonder what you are up to!!!!
I'm not sure how private messaging works here - but if you want to - feel free to reach out and we can chat more privately if you wish.
Larry