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Flatcoat

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I'm a new poster here that has been getting a lot of tests done and am concerned about whether I have ALS. I'll be as brief as I can. In the last week of Dec I had numbness on the left side of my face, the outside left of my arm, and the outside of my left leg. I went to my GP in early Jan and who did a physical exam (no issues) and sent me for an MRI and contrast MRI of the brain (found nothing). GP said to keep an eye on things. I felt so bad over the next couple of days that I made an appt with a neurologist. In the time between when I made the neuro appt and actually had the appt I read about twitches as a sign of ALS on the internet and immediately began twitching all over, but especially in my calves. Twitching 24/7 has not stopped since then.

Had the physical neuro exam and all as was normal. Only thing I feel is some heaviness and mild pain in both triceps and occassional (but not constant) stiffness in my thighs. Have had two EMGs. First EMG showed fasiculations and active denervation in legs, and chronic denervation in left arm. Second EMG was done today in left arm, back and tongue, and showed no fasics or any kind of denervation. MRI of spine was done a couple of days ago but no results yet.

I see the neurologist on Tuesday! I'm really concerned on what I might hear. What guidance can the people on this forum give me?

Thanks very much in advance!
 

AlmasDaddy

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Emg

If you honestly believe that you have ALS, a disease with no known cure and no treatment that will stop it . I would highly recommend you make sure your insurance policies are all up to date and in effect before you precede any further.
 

quadbliss

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Good advice!
 

dana

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216
Not only do you want to make sure your health insurance is all lined up, but you also want to make sure you have a life insurance policy too. It was too late for my dad to get a life insurance policy by the time he went on his vent. He could have, however, received one when there was just "talk" about ALS possibilites. We are fortunate enough for my mom and dad to be financially secure, but not everyone is.
Dana
 

Al

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Hi flatcoat. Interesting name. Welcome to the forum but sorry you have to be looking for information of this sort. First of all I'd say try not to panic. The first EMG showed anomalies and the second was OK. It is possible there was operator error on one of the tests but who knows which one? That being said you may not have ALS as there are quite a few conditions that mimic it and you could have one of these.
The Neuro just may say there is nothing conclusive and come back in 3 months. This has happened to a lot of us and is just one of the fun things about this disease. There are people here after 2 and 3 years of symptoms that still do not have a positive diagnosis.
Hopefully you won't be one of these because that is even more nerve wracking sometimes than knowing for sure. Good luck next week and let us know how you make out.
AL.
 

Flatcoat

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Thanks, Al! It's obvious to me that you are a rock to many people on these forums. I'll find out everything (or at least more) on Tuesday. The name "Flatcoat" comes from my dog, a flat-coated retreiver (Google it and you'll see what they look like.)

Thanks again!
 

CindyM

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Good luck on Tuesday, flatcoat. Hope all goes well. BTW, I googled the breed and went to the photogallery. Nice breed of dogs. We adopted an English Mastiff ourselves and Sam has added a new dimension to our lives. He has a unique personality but people forgive him because of his good looks. Don't forget to write back and tell us how the tests worked out. Cindy
 

Flatcoat

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PA
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Went to the neurologist today and went over all info to date. He said that my EMGs showed mostly chronic denervation with three spots of mild active denervation in the legs. No denervation in tongue or spine. The spinal MRI showed moderate herniations of the C4 and L4 discs. He did another physical neuro exam and found normal reflexes, normal strength, and no atrophy. He said, " I do not believe that you have ALS, but because of your EMG results it can't be definitively ruled out at this point." He said that there were two possible next steps. One would be to wait 6 months and then come back to him. The other would be to visit an MND specialist at Penn (I'm near Phila, PA). I asked him what he would do. He said that if it was him he would visit the specialist to get reassurance that nothing is wrong, and that they were MND experts and he was just a good general neurologist.

So I'm going to see the specialist in 2 or so months. In the meantime I'm going to try to have a positive attitude and see how many of these symptoms I can get to disappear. Thanks for all of the help and advice. I'll post again when I have more info.
 

liz

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NY
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Flatcoat -

Please don't take this the wrong way (you may be OK) but definitely take the advice given about life and health insurance. Also definitely keep the positive attitude - I see plenty of reason for hope. Just hedge your bets, as they say.

Who are you going to see in Philadelphia? I'm originally from that area and have a cousin who's connected with the ALS Center there. They are well-regarded.

Liz
 

CindyM

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Hi Flatcoat - I jsut wanted to second what Liz has said. It never hurts to plan for the worst and hope for the best. That's probably a good way to live even without a horrible disease looking over your shoulder. Cindy
 
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