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childermass

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Hello,

Any help would be appreciated. I got an EMG/Nerve Conduction Test today at GW Hospital by the dr who is in charge of the ALS program there. She did the actual EMG. My NCT was fine as well as some test to test my muscles as they connect to the nerves, I think. Tested in my arm, shoulder and face, which was normal. If that's normal for people, how does ALS then show up later?

Next, on the EMG, I showed muscle abnormalities in 3 places. 2 were symmetrical. Those were in muscles above my quads, not sure what they're called, but it was on both legs, and then my right bicep. The dr told me she did not see any myopathy with that, nor ALS, so she did not think at this stage that it was muscle disease. She said there was no inflammation, which was a good sign.

I am still waiting for blood work to come back, CPK test I believe. Basically, the tests seemed very inconclusive for my piece of mind. I'm still left with weakness in the two muscles that I knew about, only they weren't my quads, and now I have added my right bicep. So, something is wrong and the doctor doesn't think that it's a muscle disease or ALS. I have this fear, from reading this board, of people who had EMG's done initially that did not reveal the ALS, that I actually have it.
 

childermass

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Now I also have pain in my left jaw

Just started last night. Unsure what it's related to, I wasn't doing anything, just sitting on the phone with a friend as she helped console me. When I got off, I noticed that my left jaw hurt and it has never continuously hurt before. I can't open my mouth without pain. I'm wondering if anyone else has had this symptom before and if that may be indicative of the facial symptoms people talk about. Thanks.
 

Jamiet

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We are sorry you are going thru this. It's not easy, we know and can relate more than others.

We can only help if we know exactly what the abnormalitites are. I.E. - was there fibrillations, PSW's, fasics, myopathic, myotonic discharges... YOu need to obtain a copy of the EMG report from your doc, or call your doc, ask exactly what the abnormailies are?

Whatever you have is affecting your muscles. IT could be as simple as guillian barre, or as serious as MS or ALS. No one knows at this moment. They will figure it out, the problem is that you need help coping in these tumultous times.

I suggest you ask for a sedative, like tranxene, then get on an SSRI, such as wellbutrin, lexapro, zoloft or effexor. This will help you cope, they saved my life. I was read to write my own eulogy (sp.). This was a year ago for me, Sept 06, i'm still here and kicking.

If there is anything we can do, please let us know, in the meantime, get a report from your doc. We also need to know other things, like:

1) How were your reflexes rated, are they hyper or hypo or normal?
2) What about other refelxes, such as babinski sign and hoffmans sign? Were they pos or neg?
3) Any jaw jerk?
4) Any weakness noted?
5) Any atrophy noted?
6) Any fasics noted?
7) how did your cranial nerves appear (I.E. - Tongue), were all normal looking?

take care

Jamie
 

childermass

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I believe my reflexes were rated normal. The dr did not say anything regarding them after testing them. The neurologist who looks after me for my headaches also tested my reflexes recently and said they were normal.

I did not have the babinski sign and I don't remember off the top of my head about the Hoffman's sign because I didn't know anything about it before you mentioned it. I think she did something with my nails, and being that she runs the ALS clinic, I assume she would have checked and she didn't mention anything abnormal about any of the tests she did to me that day.

I don't think so, but like my previous post mentioned, I now have pain in my left side, started last night for no apparent reason and it constantly hurts and feels strange and hurts most when I open semi-wide to wide.

I have weakness in the 3 muscles mentioned. My meeting with my headache neuro showed that I had weakness in both legs. The ALS specialist was not able to repeat that though. I thought maybe because he was stronger than she was? and, with my headache condition, I had stopped working out, but every now and then, I would take free weights and lift a little in my apt, and one night a few months ago, I noticed my left arm was slightly stronger than my right, which was strange as I'm right handed and have been stronger on my right side for as long as I can remember. That was the last time I lifted weights like that. Additionally, after I developed my headache disorder, I lost a lot weight/strength from nausea, depression, etc. However, I don't believe that accounts for the weakness in my 3 muscles since that's a different kind of weakness than my other muscles which have lost strength.

No atrophy that I notice.

I have fasics all over. She saw them on the EMG and diagnosed me right now with BFS.

My tongue appears to be normal looking.

I will hopefully talk to the dr tomorrow as my blood work came back today. My CPK was normal. I'm also afraid of having a condition called Acid Maltase Deficiency, a rare muscle disease that fits my symptoms as well, sans the fasics and face pain. I just know something is wrong and that my weakness is not from a benign cause and it's scaring the hell out of me. I just spent a year with a miserable headache condition that left me in pain 24/7 and about a month ago, the medicine finally started to work and I finally got the associated stomach problems under control as well and had started to get my life back and now I'm hit with this. Thanks for listening and any help you can provide.
 
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