So afraid because the muscle weakness and twitching

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New member
Oct 7, 2022
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Hii you all

First of all.. before i begin thanks for reading this i know that you guys have a lot on youre plate.

I also know the Answer i think.. buth i want to make sure that i am not ging crazy.

Before ore holiday i was feelin sick.. few days later a terrible headache pups up and never go away. 2 weeks of headache..

After that 2 weeks.. i was noticing that my right arm was having a hard time to hold my oldest son up.. like a heavy feeling around the shoulder. I didnt Pay attention and was moving on.. buth now you can guess.. twitching came along and then in the legs.. and i made the most stupid mistake. Open the internet.

Few days later i noticed my knees where feeling heavy also. And it became more and more. It stretched out to my calves and upperleg. Twitching was now in my whole body.. legs.. back.. and other places. In this proces my right arm was getting weaker and weaker. I could hold my son up for hours.. buth now it was maybe 2 minutes and when he was trying to get rit of me i couldnt hold him..

My legs are still not the same.. i notice that i can not sit down without pain-shaking.. the feel really poor. When i am moving a lot my muscles wil shake ( like bringing a spoon to my mouth after i hold my son to long.. my upper arm muscle is shaking like crazy) because it was to much..

Also my right arm is feeling weird.. heavy in a way and like there is no feeling in it sometimes.. also with making this message it feels like a muscle is stretching..

Noticing that every time there is more pain/weakness. Like my neck area feels realy strangeld.. sometimes my lower back and upper back..

I am waiting on a appointment in the hospitaal by the neurologic in a bigger hospital.. i already had a mri and that one was clean

Now is my health in general the worst.. i fall from the one in the other. And i am really afraid this time its me again that has the 1 out of 100.000. I have a 6 months old an 2.5 years old .. i am 31 .. and have more auto immuun diceases. Nothing that would link to this.

Could you guys find yourself in the symptoms i have? One part of me says .. its to fast.. and with als its not so fast with twitching alover.. and muscle weakness really fast on multiple places. I cant remember any symptomen before that 4 weeks.. so it means that its going on for 4 weeks ore so. Maybe more buth i didnt noticed it..

I love to here if i am going crazy and its progressing to faster.. ore that i made a right decission to go to hospital. I cry so much when i look at my children 😔 i know that i need to wait and see buth in netherlands the waiting times are so long😭 i hope that nothing stops working because then i am really worried.

Thank you all. -- my english is not the best out here..
Sorry for all you are going through.

Try reading this post carefully to start with.

ALS is not an autoimmune disease.
What you describe does not sound like what we experience with ALS.
I'm glad you are being referred on to specialists and they can work through this including the most important clinical examiniation.
What you report is lots of feelings, fatigues and oddities that people with ALS don't experience.

Let us know how the specialist appointment goes.
I will do. Thanks for taking time to read it. I had read te stickies a lot of good information. I know als is not auto immuun.. i hope that it wil become one so that people dont pass away from it =( i hope i will feel better soon and not feel any weaker than i do now. I am tired of the so could spaghetti legs and arms.

Thanks and i will let you guys know when i had the neurologic appointment! It wil takes some time i guess.
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