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Karin Joy

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I am sorry I haven't been on in awhile - and I just was reading the "arugments" regarding my post.

So, now I am totally freaked out and feel sick that I caused the arugment.

I did go back to the neurologist at the ALS clinic and she did the usual strength tests, and told me that I am the same, she did not want to do an EMG due to the fact that I just had one in late January.

So is everyone telling me that I do have ALS - I am so confused and now scared to death. I still am having the horrible twitching in the left leg and I now have the cramp like feeling there as well. After reading the posts, I started doing the self-testing and hopped on the left leg for 100 counts - and now I made the twitching horrible - has anyone here experienced this after exercising - the twitching is immediate? I also have the pain in my hands the thenar muscle - and my left hand has a big dent in it - whereas the right one does not. I showed it to Dr. Abi, she is the neurologist I see at Cedars Sinai who heads the ALS clinic.

I have heard that a neurologist would be able to pick up something related to ALS on just the clinical exam alone - she was not able to fatigue any of my muscles and I had to do what looked like the chicken dance for 10 minutes.

Maybe I have gotten worse in the last two weeks is that possible?

MTpockets - I asked her about the elevated CK - she said there could be a 1,000 reasons for the elevation - it is not always related to ALS. My last test was at 213 (normal being 29-168). That never seem to be a concern for her.

So should I go to a third neurologist and get another opinion? Or is this just a waiting game?

Karin
 

wright

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Hello Karin

Please don't apologize because there is absolutely no need for you to do that. It was our fault for "hijacking" your thread and I will certainly take my share of responsibility for that happening.

No one on here told you that you have ALS . . . or at least that I'm aware. I'm glad you got that appointment with your neuro and that she alleviated your fears. She was trained at an ALS clinic, so I would feel good about that. Try to relax.

Welcome back, by the way.
 

Al

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Karin please do not worry. There is stuff going on here daily and if you don't read each and every post by everyone it can be upsetting. Don't sweat the small stuff. You may have bigger things to worry about. But then you might not. Take care.
AL
 

wright

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Karin, I sent you a PM. I'm telling you here because I wasn't sure if you have enough posts to actually receive a PM. If you didn't get it, please let me know.
 

andyvaughn

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Karin,
I don't know if you have ALS, or don't have ALS, I am NOT a nuerologist, but do live with my husband that has ALS. If it is any comfort to you, my husband sees Dr. Abi at Cedars. She told my husband he had ALS on our first visit, he had only had noticeable symptoms 1 month at the time. She was 100% certain at the time that is what he has, a visit to UCLA confirmed the diagnosis. Dr. Abi is very well trained and highly respected in the ALS community. I don't think she jumps to rash conclusions either way, but she certainly isn't afraid to tell someone they have ALS based on our experience!
I am sure that everyone has told you this, but fasciulations can be benign. I get them sometimes, and I don't have ALS...
Wishing you well
Andrea - wife of Pals Jim
 
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