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CB1977

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Thank-You everyone for the replies over the last few weeks.

I had an EMG today, it came out normal. It took about and hour, the person who did it is a nerologist with at least 10 years expericence. He did it on my right hand front and back of thumb area, my tricep, my bicep, my neck (left side) and my toung (from underneath my chin?).

I dont have the official report yet but he said that everything looked normal. He said I had a few pops in my tri but that was nothing worth being worried about. I asked him specifically about ALS and Bulbar ALS and he said he didnt think I had anything to worry about at all because the MRI on my neck muscles would have shown atrophy, the blood test would show my muscle enzymes (CK or CV..i cant remember) as being well over 400(mine were 139) and the EMG would have showed something. He also said that I was very young to get ALS and it would be very rare (but I already knew that). Does his feedback and advice seem accurate per your experiences?

I am going to get a second opinion at OSU in October just to be sure but I will probably pursue this issue with a auto-immune specialist going forward.

CB in Ohio
 

BethU

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GREAT !

Thanks for letting us know the results. I am really happy for your outcome. We need good news on this forum! :)

BethU
 

rose

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That's great news! very happy to hear it. Next step is the rheumatologist, right?
 

CB1977

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Thank-you Beth and Rose-

I was wondering if I should get a second opinion at OSU clinic. It takes about 2 months to get in. From what I have been reading, it seems that getting one more EMG from a clinic would be a safe bet, especially if it is 2-3 months from now. I will certainly be looking at other avenues to get a diagnosed. I am seeing my GP tomorrow and will ask him what he thinks is next. When they do an EMGof the tongue, do they do it from underneath the chin? I thought that was strange?

CB in Ohio
 

Al

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With mine they said stick out your tongue and went into the side. Not fun at all.

AL.
 

brooksea

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Yes under the chin is the way the Neuro performed EMG on my husband.

If you are still worried, then get with the ALS Clinic in your area.
 

CB1977

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Al- do you know anything about the CK levels being very elevated in people with ALS? My nero told me this but he seemed to have some contridicting info to what I have read on this site. He also told me that I would not have pain in my neck muscles if it were ALS and from what I have read he is mistaken? When I told him I have also had a nagging cough for 5 weeks he said "if you had ALS you would not be able to cough so having a cough is a good thing"? He also said I would be slurring my words if I had bulbar.?
 

CB1977

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Thanks CJ- I am going to go to a clinic. Is Ohio State University a good one or is there a better one in Ohio that I should try to go to?

CB in Ohio
 

Al

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Your guy does sound strange indeed. I have ALS (limb onset) and can still cough. I know bulbar patients that can still cough. Pain in neck muscles is not usually a symptom but you can have cramps that are painful. Being in my chair in the back of the van and bumping along bounces my head which gives me muscle pain but that's different than your's. Average CK is around 200 depending who you ask. Mine was 1200 last time I asked. Heart attacks can elevate CK as well. Slurring and swallowing problems are usual symptoms early on.

AL.
 

wright

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It doesn't matter whether your neuro was correct in what he was saying about ALS. As your tests have already indicated and as you have already been told on here: your symptoms are not due to ALS.

Get another opinion for your peace of mind, but I'm fairly sure they'll tell you the same thing as your initial neuro . . . and then please believe them.
 

CB1977

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Al and wright- Thank you for your responses. I certainly believe what the people on here say. When you put all of the people on this forum together and their experiences, I think collectivly they know more about ALS than most neuros! I just want to say that you all have been so awesome and are really special amazing people. I will come back and let everyone know what I do get diagnosed with when and if that happens.

CB in Ohio
Go Buckeyes!
 
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