RohnboSlice
Active member
- Joined
- May 9, 2011
- Messages
- 30
- Reason
- Learn about ALS
- Country
- US
- State
- CT
- City
- Southington
Maybe some of you remember my posts from the spring and summer. I was sure that I had ALS due to my muscle twitching, some muscle wasting and weakness (especially in my thenar muscles and forearm), and exercise intolerance.
Although I had four EMG's that didn't show any signs of denervation/etc., I still thought in the back of my mind that the neurologist was missing something and I would eventually be diagnosed with ALS.
Last month the neurologist and I finally decided to go through with a muscle biopsy to see if any information could be acquired through it. Turns out it was very helpfulm, as it came back that I have a type of myopathy. More specifically, it is a glycogen storage disease. (If you want more info on it, just search it.)
My main point with this post is to show that there are so many things that it can be instead of ALS. Apparently the odds of getting this disease are 1/100,000 - even rarer than ALS. It will be a constant struggle with this disease, but it is not ALS. I spent way too much time focused on ALS and not enough time living my life in the relatively good health that I was in.
Although I had four EMG's that didn't show any signs of denervation/etc., I still thought in the back of my mind that the neurologist was missing something and I would eventually be diagnosed with ALS.
Last month the neurologist and I finally decided to go through with a muscle biopsy to see if any information could be acquired through it. Turns out it was very helpfulm, as it came back that I have a type of myopathy. More specifically, it is a glycogen storage disease. (If you want more info on it, just search it.)
My main point with this post is to show that there are so many things that it can be instead of ALS. Apparently the odds of getting this disease are 1/100,000 - even rarer than ALS. It will be a constant struggle with this disease, but it is not ALS. I spent way too much time focused on ALS and not enough time living my life in the relatively good health that I was in.
