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vantec

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Learn about ALS
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Wakeman
Has anyone ever had two clean EMG's, and then got another one that showed you had ALS? Also, I am having great difficulty walking (I fell to the floor twice, the last time was yesterday), but my arm strength is still not too bad. Is it upper neuron damage when your legs are stronger than your arms, or is it lower neuron damage?

One last question. My doctor put me on Cymbalta, and is anyone that is on this antidepressive medication, ever have the side effect of your stomach ache?

Conrad
 
I never had a clean EMG - only "dirty". The first showed problems in the one limb that was presentng symptoms. The second, a year later, showed problems in three limbs after symptoms started spreading. Hence, the ALS diagnosis.

If I had two clean EMGs, I wouldn't be spending anymore time here wondering if I had ALS.

Liz
 
liz said:
I never had a clean EMG - only "dirty". The first showed problems in the one limb that was presentng symptoms. The second, a year later, showed problems in three limbs after symptoms started spreading. Hence, the ALS diagnosis.

If I had two clean EMGs, I wouldn't be spending anymore time here wondering if I had ALS.

Liz

Liz,

Ok, you don't think I should spend anymore time here wondering if I have ALS. But can you explain the progressive weakness in my arms, legs, and hands, muscle atrophy, weak nasal sounding voice, difficulty swallowing, I've lost 15 pounds, have dry eyes, trouble sleeping, twitching in my hands, face, back, legs, and cramping in my muscles? I am starting to experience shortness of breath, which has me very scared. Knowing you will never get better is a horrible feeling.

Maybe I have an autoimmune disease, not ALS, but how do you know for sure? There must be a time when an ALS patient has a clean EMG, in the very early stages. I'm going to my Neurologist again at the Cleveland Clinic on Friday the 6th for another round of blood tests, and an EMG. I sure hope it is something they have a treament for.

Conrad
 
Hi Conrad,

I know how you feel, not sure what you have, but still knowing you have a chronic illness that is sucking the life out of you. Even if it isn't als, you still feel very ill and as if you are dying. It seems sometimes people think we should be happy, but we can't manage to obtain any strength, or our muscles are cramped and painful and we just feel generally bad. Nobody wants to be sick and, although we are very happy not to be diagnosed with als, our human nature wants to find a way to feel better. And a diagnosis is the key to the latter.

I am really sorry for how bad you feel and I really hope you find out why so that you can begin to get help. Have you ever discussed Sjogren"s syndrome? It is an autoimmune disorder that dries your organs out. It begins with dry eyes. My rheumo tested me for this when I went in with muscle spasms and weakness. It's worth a try. Good luck on your next appt., I will be thinking of you. Leslie
 
On Friday, I had my third EMG and NCS test, this time at the Cleveland Clinic. It took three hours, and when the Neurologist did the EMG, there wasn't a clean EMG this time. He brought in another chief Neurologist, and he ran the tests again. This doctor asked a lot of questions about my weakness, my swallowing problems, and if the weakness comes and goes, or was it progress, which it is.

I was quite anxious, and asked the first Neurologist how my EMG looked, and all he said was that it wasn't normal. He said that the top Neurologist would have to look at all my information, and would get back to me by phone. They want my blood work, and may run the test again.

So, for all that said you could not have a clean EMG with symptoms, and then later have a "dirty" EMG, like I did, I would say you were wrong.

I'm afraid I am having the early stages of ALS, because I have checked all my symptoms, and they all point to ALS.

Conrad
 
Hi Conrad,

I have also read that some patient's have clean EMG's and then dirty ones. I really hope that it is something else, though. When is your next appt.? I hope it is soon so you don't have to worry without answers. Good luck. Leslie
 
emg

Conrad, I just saw your earlier post today. Someone here said they had three or four clean emgs. before a diagnosis. Sorry to here about your appt. showing a bad emg. Barry
 
did he tell you what was wrong.

The same thing happened to me, the EMG Neruo told me ....abnormal..and i was having a very very specalized test, but the ALS specalist told me, there was nothing wrong again, so i was confused. She has even told us she dosent even think what i have is the beginning of ALS.......Still confused.

I hope, the EMG results didn't include Fibs & PSW's, axon loss or large number of fasics, anything else that is "bad" on the EMG is good

let us know...


rgds,


Jamie
 
hey vantec how was your ncv test are did they do one?
 
Hello Vantec, Zac, Jamiet. I can sympathize with each of you. I was told I have a neuro-muscular disease and will not get any better, shouyld prepare myself for getting worse, but unless and until I get worse they will not be able to say which disease is affecting me. So I am off to enjoy my life, and have chosen to believe the other shoe will not drop. But I will still stick around. This forum really helps me remain grounded and it keeps things in perspective for me. Plus the information is top-notch! Hope your day goes as well as it can for each of you! Cindy
 
Hi Zac,

They did a NCV test, and I asked the operator if it was normal, but she said that she could not tell me, until the EMG test was done, and the doctors looked at all the results. So, I don't know how my NCV test came out.

Conrad
 
all my emgs are normal and I still have ALS, so go figure Pat
 
Hi Pat,

How did they diagnosed you without an abnormal EMG?

Conrad
 
Hi Annmarie,

No, the doctor didn't call my yesterday, so I called the Neurologist office, at about 2:30 pm, and asked if the doctor could call me back. I'm beginning to think he isn't going to call me. I hate waiting for a doctor to call back.

Conrad
 
Hi Conrad,

I know that living without a diagnosis is difficult and I know the waiting is very tough. Hang in there though, you will get a diagnosis at some point. The worst thing would be to have an ALS diagnosis when you might not actually have ALS. Doctors do not want to give you a diagnosis where there is no hope for recovery unless they are absolutely sure. I know that there are many people on here who have experienced a positive diagnosis for ALS and it has turned out to be something else.. and of course the opposite happens as well.
I can tell you from personal experience, the moment the doctor gives you a diagnosis for ALS.. your world shatters. I was with my mum when she received hers and although relieved to get her diagnosed, we were absolutely heartbroken to know that ALS would eventually take her from us... hope was taken from us at the same moment. It's a day that changed our lives in a heartbeat. Her first symptoms were late Oct. 2006.. her diagnosis March 8, 2007.. and now as ALS rapidly takes over my mum's body.. I grieve and celebrate her life at the same time and I miss the little things.. like.. a simple hug from her. 12 short weeks ago.. her first EMG was "negative".. 4 weeks later.. her second EMG was "positive".
We take it one beautiful, given day at a time. I savour every moment I have with her and I remember the days when we didn't have a diagnosis and I wish I could go back there, blissfully unaware of what the future held. I hope for anything but an ALS diagnosis for you Conrad. Please hang in there. .I know it is frustrating.

regards.
 
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