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toolowgear

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Sorry to do what most do by asking do I have ALS? But I am very terrified. :-(

I have been getting these symptoms the past 6 months it started with a feeling of muscle movement ni my arms and legs. Then I started getting lots an lots of muscle twitches all over my body mainly in my arms and legs, so much its annoying me a lot as they are so frequent. I feel as the last 6 months has gone on things are getting worse. My tongue whilst not trembling the way it would in advanced ALS does feel like it twitches now and then but these following 2 symptoms are scaring me...

I read someone else who posted here had the same signs - They said they noticed that when they tried try to move an arm/tongue/jaw etc. they felt like for a split second the signal was delayed to that part of the body. I HAVE THIS :-( I feel this all over my body at times and it comes and goes.

I go to the gym now and then but I go through long periods where I do not go. When I go back and do bicep curls and that my biceps and forearms will ache for 3-5 days after which I know is normal. I have not been to the gym for a while and the other week I went and did bicep curls and after as expected my arms felt and ached. This time its different as 10 days on my muscles still feel tense and achey after the gym and its going to be 11 days tomorrow now. I did not lift very heavy weights so why is this taking so long? Is this because I have ALS and the muscle cannot recover as much? I heard people with ALS should not go to the gym is this why? Also when I type on my computer my forearm muscles often feel they are getting weak like when I am in the gym and doing repetitions and the muscles are burning out. I worry this is ALS?

I did go to a doctor about the twitches and he referred me to a Neuro who was a grumpy man who would not really answer any questions I had. He ordered some blood tests and MRI of my head which was all normal. I also had a test called an Upper EMG? where they stuck needles in my arms which hurt. He said that was normal. After my follow up he said to just come back in 6 months. He has left me confused why ask me to come back in 6 months if he feels everything is ok?

I have read on here that people say an EMG is the golden test for ALS so it makes me think I don't have it as my EMG he said was "Clean" but I just had something called demyelination. I read on this forum that some people with ALS also had clean EMG's and had aching muscles also, so this makes me think I do have it. It seems its hard to get a conclusive diagnosis. I am also sleeping a lot these days.

Could someone help me? Is there a chance I could have ALS?

I am male aged 50.

God bless you all.

Andy
 
It does not sound like ALS. Did you ask grumpy neuro about the demyelination? That is not an ALS finding so your EMG was clean as far as ALS goes but if he really said demyelination I would want to know details and what it may mean. There may be an explanation ( not ALS) for your symptoms. That may also be the reason for follow up again not for fear it is ALS but related to the demyelination or it could be he has everybody follow up to cover himself in case something ever happens. I would get my report, discuss it with my pcp and see if you should wait for follow up call grumpy neuro now or seek another opinion if your pcp thinks he is not addressing the demyelination issue appropriately. It may be such a minor issue that it does not need attention beyond a 6 mo follow up visit but I can't tell from your post.
The symptoms do not sound like ALS though
 
Hi Nikki,

Ok I will ask him about this thing. So my muscles ache weakness thats not a symptom of ALS? I thought they are painful over 10 days on because they are being weakened and cant repair as quick as they normally do.

My heart and love goes to those here with ALS and I hope my questioning in no way disrespects those who have been diagnosed with it.

Andy
 
Andy, it is not a matter of "can't repair as quick as they normally do." They can't repair at all.
 
Cheerleader,

Hi they are still painful after 10 days so they not repairing?
 
None of this sounds like ALS to me and the clean EMG says it is not ALS.

But Nikki is right, you need to follow up on the demyelination. Get a copy of the NCS and EMG and ask your grumpy neuro to explain it. If he won't, then ask your PCP to explain it. If no one will, find a new doctor who will.
 
TOOLOWGEAR: You don't have ALS.
I read and considered all of your symptoms and I don't see ALS in there.
ALS is not about muscles feeling painful or aching.
Believe your neurologist.
 
Hi Atsugi, Nikki,

When I raise my arms they tire very quickly and after 10 secs the muscles start to feel like they are burning out as if I was holding up weights and I have to put them down again. Surely that is muscle weakness?
 
Not like ALS. For heaven's sake explore demyelination as the cause of your symptoms and stop chasing ALS. This is not the right place for you. Closing thread
 
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