ktmj
Distinguished member
- Joined
- Oct 17, 2008
- Messages
- 421
- Country
- US
- State
- Dixie
- City
- Redneck
Wow - what a journey. Been seeing my regular neurologist regularly. Brief history - "clean" EMG done by him early Oct, visit to neuromuscular specialist at Emory in Nov with normal clinical exam (whole 'nother story), follow-up visit with him in February and have requested another EMG since it is a university and ALS center.
So I have been consistently seeing my regular neurologist. I called him last week about the "jerking/twitching/whatever" in my shoulders and he wanted me to see one of his partners. So I did yesterday. By the way I like my neurologist, and I was impressed with the first visit with the new one. She was very thorough and professional.
I did not even mention ALS but I am sure she saw my concern about it in my file. I simply went over my progressive symptoms, she did a clinical exam. Easily passed all the strength tests, which I knew I would. I showed her the jerky arms and she was quite unimpressed. Told her about my mild swallowing issues, tight and spasming face/jaws/lips again unimpressed.
Again, I thank God I can still do a lot of normal daily activities. It is doing fairly physical stuff that really gets my attention and highlights the weakness and coordination issues as the muscles fatigue.
I know there are people in much worse shape - I've told you admire you all battling this stuff. I guess my point of this post is that neurologists are not superhuman - there are only certain things they can do to diagnose these things and it typically involves progression. Thus the huge waiting game and frustration that many of us experience. I keep thinking dang I hope this is something treatable and they can find it before I have some disability, but I know that is probably not going to be the case.
Anyway, I don't intend this to be a downer, just reporting progress. I don't know if it is a blessing or a curse to have symptoms literally in every limb and my head. I know that it is not the "typical" ALS progression, but I don't think any of us are typical when it comes to neurmuscular stuff.
So I have been consistently seeing my regular neurologist. I called him last week about the "jerking/twitching/whatever" in my shoulders and he wanted me to see one of his partners. So I did yesterday. By the way I like my neurologist, and I was impressed with the first visit with the new one. She was very thorough and professional.
I did not even mention ALS but I am sure she saw my concern about it in my file. I simply went over my progressive symptoms, she did a clinical exam. Easily passed all the strength tests, which I knew I would. I showed her the jerky arms and she was quite unimpressed. Told her about my mild swallowing issues, tight and spasming face/jaws/lips again unimpressed.
Again, I thank God I can still do a lot of normal daily activities. It is doing fairly physical stuff that really gets my attention and highlights the weakness and coordination issues as the muscles fatigue.
I know there are people in much worse shape - I've told you admire you all battling this stuff. I guess my point of this post is that neurologists are not superhuman - there are only certain things they can do to diagnose these things and it typically involves progression. Thus the huge waiting game and frustration that many of us experience. I keep thinking dang I hope this is something treatable and they can find it before I have some disability, but I know that is probably not going to be the case.
Anyway, I don't intend this to be a downer, just reporting progress. I don't know if it is a blessing or a curse to have symptoms literally in every limb and my head. I know that it is not the "typical" ALS progression, but I don't think any of us are typical when it comes to neurmuscular stuff.
