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habeeb2005

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Hi, i am new to this forum and must say it is very informative and there seems to be a lot of compassion and understanding from everyone. I have been having a lot of what seems to be neurological symptoms going on lately. I have weakness in my legs, arms, feet, and hands. My tongue is always sore or painful(kinda hard to describe really), but it is constant except when i am sleeping. As far as swallowing goes, i almost always get that feeling of something stuck in my throat whenever i eat and sometimes when i burp some food will come up. The last thing i am experiencing is shortness of breath with minimal exertion and a pain or cramping feeling in my abdomen about where my diaphragm is. I am, like a lot of people, scared it is ALS. I think deep down I know but i am in denial.
 

Ms. Pie

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See a good Neurologist for answers to your questions. We are not qualified to diagnosis anyone. Good luck to you!
 

habeeb2005

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I saw a neurologist about two months ago and he did the usual clinical tests and i also had an emg about one month ago. The emg showed carpel tunnel in right hand but no evidence of MND, but why all these symptoms of ALS? Maybe the emg was done too early?
 

Katie C

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Get a swallow test done then.
 

habeeb2005

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That was my next thought, i wasn't looking for a diagnosis, i just thought maybe someone could tell me if these symptoms sounded like ALS or not. Thank you for replying though!
 

TedH5

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The weakness you say you have in your limbs, did the Neurologist find this weakness during a clinical exam? If the Neuro did not pick up on it then it is not clinical weakness. Do not jump to conclusions. Follow your Neuro's advice, be your own advocate with your Dr but please for goodness sake do not self diagnose. Good luck.
 

habeeb2005

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Thanks for the reply TedH, i have read about your story on the internet and am glad you responded so well to the clinical trial. It gives people hope and inspiration. The neuro did not detect any weakness from the physical exam but i feel it myself all the time. I think the thing that worries me the most is that my tongue symptoms are constant, and my shortness of breath and abdominal pain or cramping from minimal exertion.
 

TedH5

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Thank you for the kind words. My question for you is how has the weakness manifiested itself? Are there things that you can't do that you used to be able to do? For example they told me that my left arm had clinical weakness before I even noticed it, when I came home I played a game with my kids and had them each arm wrestle me, I could not even beat my 6 year old daughter. She could not beat me because of the sheer size difference but despite all of my effort we were stuck at a draw, that is weakness.

As everyone else said ask for a swallow test, if you are easily getting out of breath request an FVC as well as MIP and MEP test.

I am not sure where you are going to the Dr but I do believe that Tampa, I believe perhaps on USF's campus they opened a state of the art ALS clinic, perhaps that is something to look into just so you can have all the tests performed in one day at one place.

I wish you much luck and believe me the fact that your EMG did not show active denervation and the Neuro did not detect weakness is a very positive sign that it is not ALS.

The worst thing you can do is jump to conclusions and self diagnose.

Do you have a follow up appt?

Stay strong and keep the faith!
 
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Ms. Pie

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Your symptoms could be lots and lots of things other than ALS. Ted is right. A clean EMG means no ALS. Keep looking until you find out exactly what it is.
I wish you luck!
 
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michael0314

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Has anyone on here ever presented and had normal emg but latter got ALS diagnosis? I had abnormal emg readings in limbs and places I did not have any known weakness in. The nuero also picked up clinical weakness in places I did not know were weak. There are many differences in people's presentation that is why I ask about the emg. I have never heard of anyone having an emg with normal results and then getting diagnosis later of ALS. I would bet you don't have ALS. Your symptoms do not sound like ALS.
 
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trfogey

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Has anyone on here ever presented and had normal emg but latter got ALS diagnosis? I had abnormal emg readings in limbs and places I did not have any known weakness in. The nuero also picked up clinical weakness in places I did not know were weak. There are many differences in people's presentation that is why I ask about the emg. I have never heard of anyone having an emg with normal results and then getting diagnosis later of ALS. I would bet you don't have ALS.

And you never will hear of someone being diagnosed with ALS while having a normal EMG. The denervation/reinnervation cycle caused by ALS in the lower motor neurons is detectable by the EMG long before the damage rises to the clinical level.

If the patient presents with upper motor neuron symptoms only, the EMG can be clean, but the diagnosis will be PLS, not ALS. Once the LMN damage necessary to sustain a diagnosis of ALS shows up, the EMG will no longer be clean.
 

habeeb2005

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Thank you all for the responses and kind words. I have a follow up next Wednesday with my neuro. I was glad the EMG did not show any indication of MND believe me, but i just thought maybe it was too early or that he did not test the right places or something. I have heard of people having clean EMG's but later being diagnosed with ALS, that's why I guess i'm still so concerned.
 

trfogey

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Thank you all for the responses and kind words. I have a follow up next Wednesday with my neuro. I was glad the EMG did not show any indication of MND believe me, but i just thought maybe it was too early or that he did not test the right places or something. I have heard of people having clean EMG's but later being diagnosed with ALS, that's why I guess i'm still so concerned.

The only neurological symptoms that you report are accounted for by the carpal tunnel syndrome diagnosis. If there were symptoms of ALS, your neuro would not have diagnosed CTS. You are imagining that you have symptoms of ALS, and that is a mental and emotional problem that you need to get some help in dealing with.

You do not have the types of symptoms that would present with a clean EMG and lead to an ALS diagnosis later. If you had those symptoms, I repeat, your doctor would not have diagnosed you with CTS. Quit behaving like a foolish and childish hypochondriac and get on with your life.
 

notme

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Hi, i am new to this forum and must say it is very informative and there seems to be a lot of compassion and understanding from everyone. I have been having a lot of what seems to be neurological symptoms going on lately. I have weakness in my legs, arms, feet, and hands. My tongue is always sore or painful(kinda hard to describe really), but it is constant except when i am sleeping. As far as swallowing goes, i almost always get that feeling of something stuck in my throat whenever i eat and sometimes when i burp some food will come up. The last thing i am experiencing is shortness of breath with minimal exertion and a pain or cramping feeling in my abdomen about where my diaphragm is. I am, like a lot of people, scared it is ALS. I think deep down I know but i am in denial.

Your gastric issues (food coming back up) can be caused by stress and GERD. Shortness of breath can be anything from asthma to being out of shape. Pain in the diaphragm region, believe it or not, can be a gall bladder issue.

Bulbar ALS wouldn't cause your tongue to hurt or be sore. Acids coming up from your stomach can cause a burning sensation throughout the entire region.

Drop the neuro and go back to your GP
 

habeeb2005

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Thanks for the reply, I hope you are right and i certainly don't want to waste time dwelling on the matter but i can't help it since nothing seems to be getting any better just worse.
 
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