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legend

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Hello,

I have seen 4 neuros, had 2 NCV's and an EMG. I have complained over and over during the past year after a gym incident that my left arm (and now right somewhat) feels fatigued/weak and cannot sleep well. I am 40 now, and never had any issues with anxiety/depression or took any meds/recreational drugs in my life prior to April 2009 and no problems physically or with sleep

When I got off a weight machine my left arm started flailing, soon after I got sharp pressure from my neck shooting into the back of my head. I went to ER and was never the same since. These symptoms went away but the arm, general fatigue and sleep problems remain.

I have no diagnosis but am now getting overly concerned.

From appearance, my left forearm does not look atrophied but now is considerably smaller than my right (I am right handed). Both arms are thinner from the forearms down, but recently the difference is that I have started to feel random twitches (like worms) in the left forearm and wrist. It's also considerably weaker. I can still move both arms freely, but from the left hand I noticed some tingling and mild trembling. Increased apathy is also a concern. For time to time, I have a wierd sensation that my tongue is enlarged, but never had a problem swallowing or drooling. Sometimes I feel like I am losing ability to speak properly and stumble upon some words, although no one seems to notice except me. This can go away for a few days then come back.


The last neuro I went to visit (in May 2010) ruled out Parkinsons and even went as far to say I don't need to see another neuro. All my clinical evals and nerve tests were negative. She did not have a diagnosis for the trembling, but I was not twitching at that time like now. I feel like I have lost strength in both arms recently, esp noticeable playing tennis. I cannot rifle the ball any longer.

I have comprehensive list of exams along with above. MRI head and cervical, MRA neck, CT scan head, and all blood work. Nothing. Had thyroid tests too. MS was supposedly ruled out...

I am afraid one day I am just going to lose control of the muscles due to the subjective feeling of weakness. If I lift something like my kids, I feel it for several days but eventually the soreness gets better.

People ask me if I lost weight but I have no answer because I know they are looking at the arms. IN reality I am 5 lbs heavier but its all in the abs. I have lost a lot of upper body mass.

The symptoms all seem to subside at night but still exist.

I have read that clinical eval + EMG absolves one of ALS diagnosis.

What do the seasoned people here think?
Thank you and may god bless you all.

legend.
 
Legend,

Sorry you are having such trouble. I'd take comfort in what the neurologist told you regarding ALS.
 
Legend, I am very new to ALS/MND, but one thing that I have learned from this forum is that a good number of people who present with symptoms of weakness, etc. go through a lot of time and tests in order to receive a diagnosis, and what's more-- some never do get anything definitive. My sister is at the beginning of her tests, but based on her blood work and symptoms so far, we may have to face an uncertain diagnosis at this point. For me, though, if (WHEN) we are able to rule out ALS through the tests that you describe having gone through, I'll be so relieved even if we don't get a diagnosis of what is wrong. Frustrating as it is to not know what's wrong, there's a lot of comfort to be had in knowing what ISN'T wrong, especially with a disease like ALS, which thankfully your tests and doctors seem to have ruled out.
 
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