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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hello - I have never posted here before but I know there are many people with a lot of good information willing to respond.

I have had a very trying 6 months and need some feedback. Six months ago I began having a host of very strange symptoms. It started with muscle twitching and some weird tingling/numbness in my hands and feet that didn't last terrible long. The muscle twitching has continued - it is pretty much anywhere on my body - arms, legs, feet, backside, right eye. I usually only feel it, but occassionally I can also see it. They usually only last a short time. Sometimes it feels like a buzzing under my feet, or sometimes like a vibrating, but usually a twitch.

I also experience large muscle jerking.

The other main symptom I have is muscular pain. The pain started out very intense and it was everywhere - my arms, legs, knees, neck, tops of feet, hands -and it moved around constantly. It was so bad for a while that I couldn't walk up/down stairs. Well, if my life depended on it I could, but I avoided them because of the pain in my legs and knees. I also had intense fatigue which I think was due to low iron. The intense pain lasted several months. It has now somewhat settled down, but not entirely, just not so bad.
I also had many months of "sensitive skin" - meaning I couldn't even rest my arms on anything or cross my legs because they were so painful. That has almost gone away.

I have never had muscle cramps or spasms. I also don't have any clinical muscle weakness, although I have had a LOT of "weakness" that seems to stem from my pain that makes my arms/legs very tired.

I have seen a neurologist in June and had an EMG and Nerve study (can't remember acronym). Everything came out completely fine with all tests normal.

I also am having trouble breathing - feels like I can't get a full breath, and I have chest tightness and pain. I went to see a pulmonary specialist and he did a full breathing exam and said all is normal. But those symptoms remain.

Right now I supposedly have a working diagnosis of Fibromyalgia, but I am still not convinced. I do still have a lot of muscular pain which moves around all over. Also the twitching and jerking is getting really bad. But I don't wake up extremely stiff and sore like most with Fibro. My pain gets worse as the day goes on, though.

I guess I just want to not worry about ALS. Can you have a clean test and later have another one that isn't clean? It's the twitching that worries me. Last night I went to bed and my ENTIRE body started twitching AND jerking so intensely that I had to take 2 muscle relaxers to go to sleep. It was horrible. I know millions of people have benign twitching. But I have read that many people who have ALS had twitching as their first symptom. So I continue to worry. I am a 40 year old mom of 2 young ones.

I would so appreciate any feedback. (So sorry so lengthy, but wanted to be thorough!)





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