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ktmj

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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.
 

planningguy

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Thanks for checking in. Sounds like a similiar story to a lot of us. Was there a particular reason he wanted you to see his partner (seems like your mention/demonstration of the jerking)? I'm hoping your Feb. appointment will go a long way in unraveling this mystery for you.

Robert

PS Don't give up hope. We've had some neat stories of people who have figured out their mystery and were able to build back strength, or had their symptoms almost totally subside. Even though there is some nasty stuff out there, the body is an amazing thing.
 
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Blizna

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With clean EMGs done properly after such time period you do not have ALS. Have you any weakness etc? I read here only about mild swallowing issues.
 

ktmj

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I think I mentioned weakness, but yes I do have some, along with some coordination issues among other things.
 

olly

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[/QUOTE]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.
sorry to say jeff untill there is disability a neuro can see for themselves this is the case.
sorry you did not get any answers at your appointment this time,but good news that things seem ok for now.
 

ktmj

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Thanks for the replies. Even as badly as I want an answer I realize I am still probably better off without one right now. Keeping the faith and trying to love every minute with my family and friends I can get. Clarity about important things in life most often comes during a struggle huh?
 
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