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28 minutes ago, Momof2 said:

Scared I have ALS

 

 

 

There are a lot of specific symptoms to ALS - it's easy to get anxiety over the unknown.

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Hi. I'm a 37 year old mom of 2 (8 & 14) I'm lost in the ALS rabbit hole right now as well. I went to the doc for leg stiffness and a multitude of other things. They want to get my anxiety under control first so started me on meds, but my muscle twitching has become worse, waking me up at night, and its all over my body, though really likes to happen in the leg I've been having problems with. 5 days after my appointment I came down with covid for the 2nd time. My anxiety is through the roof, I can't eat (haven't had much more than a couple bites in days) my legs are cramping (both now) and twitching feels like it's everywhere. I am convinced it's ALS, since my blood work all just came back clean. My anxiety is through the roof, and I'm having breakdowns several times a day as I think of having to leave my children. My daughter is scared something is wrong and has heard me loose it to my husband. She came to me crying because she doesn't want me to go to Heaven yet. This is gutting me. I want so bad to get better. I hate this and the complete and total fear I have of this being ALS is crushing me. I have a follow up with the doctor in 2 weeks, but have a note in for a phone call tomorrow about my labs and fears. I don't know what to do. It just breaks my heart to think of having to leave them and not being here as they grow up. We are so very close. I feel like I'm losing my mind. I feel broken. I just don't know how to deal or what to do. I've never posted on a forum before so if I'm going about this wrong I'm so sorry. 

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Hi there and welcome,

I and so many others have been down this rabbit hole and it's one of the absolute worst holes to fall into. You can go back and read some of my posts and you can see that they're so very similar. I too had widespread body twitches and one thing I learned the hard way is that your mind can do some crazy effing stuff! I am so sorry you are suffering like this. What have you used for coping skills in the past that have helped? I know it's hard but you have to try and keep it together for your daughter! Take deep breaths, listen to some calming music, watch some ASMR, do a hobby...anything to distract yourself. Once you stop focusing so much on your body the twitching will probably stop! 

One thing that has helped me over and over is finding the old BFS forum and reading about how so many other people have experienced this same thing and turned out to be nothing at all. You can read stories here too! 

There are posts on this board about reasons why you do NOT have ALS. Check those out too. 

But the very most important thing is to distract yourself. Reach out to me if you need to talk. I am also the mother of two kids and can relate to what you're going through.

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I as well have been down this rabbit hole, the last time only recently. I had severe twitching in my right bicep area that just wouldn’t go away. I kept strength testing which ended up causing pain. I eventually went to my doctor and she nodded saying she has had MANY patients with twitching, some like me in specific areas, others widespread. She said it typically seems to go away after about 3 months. That calmed me down and sure enough it went away a month or so later.

Check out anxietycentre.com or .ca don’t recall which and look up twitching. Listen to the clip of Jim Folk, the site creator describing his experience as an an anxiety patient.

Finally, at 37 and female ALS is extremely rare, so the rarest of a rare disease. 

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