In need of advice

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Jeroen22

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Hi there,


Since 3 months i am a regulair visitor of this forum. I must say it helped me a lot. As I can see I’m one of the many that has some symptoms, went on Google, and found myself trapped in some worrysome thoughts. I tried to make sense of my thoughts and found a lot of answers on the site. But stil I don’t know it for sure, so maybe you guys could give your thoughts about me.

Male, 34 years old.

Around oktober last year I got fasculations in my right bicep. I am a little known with fasculations (mostly calves after some exercise). But now it was in my bicep where I never had this. I lasted for a month, where I got them almost on a daily base. Then I went to my dokter, he said nothing to worry as I was not showing any muscle failure and it was in 1 spot.

Then the month after it went from one place to my whole body (eye, waist, back, throth, arm, chest, innerpalm of my hand and today it is going some place between my butt and my genitals. Weird spot…

After 2 months in I went to my doctor again. He could not explane the twitching on all the spots, and referred me to the neurologist. Saidly the waiting time is 3 months!

About a month I started to get a weird feeling in my left leg. It started with some buzzing (maybe fasculations, but I don’t see them, only feel), then for a week the top of my feet felt warm/cold. Then te buzzing/fasculations went a littlebit up in my leg. I can feel them, but I don’t see them. I only can see fasculations in that leg after I wake up. It is sometimes in the top of mij feet/ancle area, and sometimes juist under my knee.

When I am exercising, last time I had to walk 100 stair steps and my calves where shaking when I came up and was feeling very weak. So I have the feeling I am week, but no signs of failure. Can still do everything on 80% of the weight I used to do before I had this. I also feel lightheaded sometimes, not after exercise, but during the day.

My questions
  • What does this sound like, I hope away from ALS
  • What do you think of the fasculations, some very weird spots (throth, area between butt and genitals)
I read a lot of post on the site, also the read before posting, but I read some things that are troubling me. For some person it began with twitching before anything els. But for that 1 or 2 post that I read, I read 20 that begin with muscle failure. So I know its fortunally very very rare. But I stil have 1,5 month of waiting on an appointment for the neurologist and sometimes I make myself crazy. Hopfully you guys can give me some feedback! Ofcours I will post the result of my appointment with the neuro als It can help some other people that are reading the forum.

Thanks!

Jeroen
 

Nikki J

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As you have read feeling weak is not how ALS works. There are many things this could be most of them benign and virtually all less terrible than ALS

re twitching as a prodrome you are right reports are rare. These almost all fall in three categories - some genetic forms of ALS ( presumably not you you don’t mention it) men over fifty(very rare even in that subgroup and not you) and people who noticed twitching, saw a doctor and to their surprise were found to have unrecognized by them weakness ( not you by your report)

you have an appointment booked. Your best plan is to stop googling and not to focus on your symptoms. The more you do the worse they will be and worrying never helped anything

good luck
 

affected

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Try to think of it this way - headaches are a symptom experienced by people with brain cancer, but one would never jump from headaches directly to there.
I hope you can start concentrating on working on all you can do for your general health and stress while you wait.
We all had to wait these kinds of time lengths to see specialists, so we know how important it is to spend that waiting time well, not waste it on panic.
Let us know once you have seen the neurologist for sure.
 

Jeroen22

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NL
Thanks for the advice, will post my results here!
 
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