Can't get ALS fears out of my head!

[Rellie73]

I have posted once before about this but I am still struggling with ALS fears. Long story short.....I've twitched on and off for quite a few years (about 6). When the twitching started I did the dreaded Google search and we all know what that reveals.

I have an added concern, which is that my Dad's cousin died from bulbar onset ALS and one of his other cousins had some degenerative thing that ended up killing him - but Dad doesn't think this was ALS. So out of 7 cousins - 1 was definitely ALS and the other we're not sure - but was some sort of muscle thing that left him on walking sticks, etc.

For the last 3 months my twitches have been concentrated in my left leg. There is other random firing (anywhere & everywhere) but my main worry is the left leg. I am still running on it every 2nd day (5 - 10K) and don't feel like it has really lost strength but my legs are often fatigued because of my running - then the mind starts wandering.

My thinking pattern now is what if the muscle twitches from 6 years ago were just a BFS type thing - but now this twitching in my left leg means something? I am trying to convince myself that this would be too coincidental. I am also worried there may be a family type connection to this disease - but am thinking more people should be affected if it was hereditary.

I am so stressed at this point! Oh, and I've been a HA sufferer for going on 20 years. I've worried about many an illness - but ALS really takes the cake as far as stress levels are concerned.

[axolotl]

Sorry to hear about your relatives, but you have to realise twitching is a common anxiety symptom, and my understanding is it's NOT a presenting symptom of ALS, and you wouldn't live for six years with vague symptoms, it's a fast and dramatic disease.

[Mommyof2boys]

My grandmother had als and passed in the 80s, and I've had twitching for about 5 months now so I feel your pain. As long as twitching is your only real symptom you shouldn't worry. I say this as I am currently worried about my own twitching lol But after 6 years a lot of symptoms would have definitely shown up by now, especially clinical weakness. I hope that you get some peace of mind, I know the feeling and only 5 months of the terror is killing me, I couldn't imagine 6 years.

[ServerError]

ALS is about failure. Sufferers present with an inability to move a certain body part. This then spreads. It doesn't present with twitching.

[Fishmanpa]

ALS is about failure. Sufferers present with an inability to move a certain body part. This then spreads. It doesn't present with twitching.

Exactly... Failure not feeling.

Positive thoughts

[Hancock]

After six years of symptoms, you wouldn't be dealing with guessing games. You'd be in the ground, if you chose no medical intervention to extend your life.

A twitch is a twitch, a cramp is a cramp, some fatigue is just what it is...fatigue. Without clinical weakness all the things you're worrying about mean absolutely nothing.

[Rellie73]

My grandmother had als and passed in the 80s, and I've had twitching for about 5 months now so I feel your pain. As long as twitching is your only real symptom you shouldn't worry. I say this as I am currently worried about my own twitching lol But after 6 years a lot of symptoms would have definitely shown up by now, especially clinical weakness. I hope that you get some peace of mind, I know the feeling and only 5 months of the terror is killing me, I couldn't imagine 6 years.


I feel like it is my only real symptom - but at times I feel I have fatigue in my legs - which I interpret as weakness.

Sorry to hear about your Grandma - was it hereditary ALS? Assuming not, surely you would know of other family members if it was. It is a very rare disease - chances of you having it (if outside the family) are fairly remote.

This ALS anxiety is the worse to deal with - the more you worry the more you twitch. I'm over it and just want to feel normal again. I've run over 35K in the last week just to prove to myself that my legs haven't lost strength.

[Fishmanpa]

This ALS anxiety is the worse to deal with

By far, the ALS rabbit hole is definitely one of the worst I've seen on the boards. I've even seen sufferers go so far as to be banned multiple times on the ALS forums and carry the fantasy to the point of telling a forum that they've been diagnosed and stopped posting only to turn up on another forum alive and well and continue to post about it under a different identity!

You've been a sufferer for 20 years so I'm sure you know how bad things can get. Hopefully, you've had therapy and are on or have been on meds and know the benefits. If you're not currently getting treatment, I would encourage you to do so before it takes over your life entirely.

Positive thoughts

[Mommyof2boys]

I feel like it is my only real symptom - but at times I feel I have fatigue in my legs - which I interpret as weakness.

Sorry to hear about your Grandma - was it hereditary ALS? Assuming not, surely you would know of other family members if it was. It is a very rare disease - chances of you having it (if outside the family) are fairly remote.

This ALS anxiety is the worse to deal with - the more you worry the more you twitch. I'm over it and just want to feel normal again. I've run over 35K in the last week just to prove to myself that my legs haven't lost strength.

My grandmother was diagnosed with sporadic. She had gene testing to see if it was familial and it wasn't. Thank you though, I wish that I had gotten the opportunity to meet her. She passed about 7 years before I was born. From what I hear though she was a wonderful, tough, fiery woman. I am also told I am the same exact height and build that she was (4'11!) The shortest person in my family =)

I am so exhausted with fear over this disease, I wouldn't wish this fear on anyone at all. I hope you are feeling better.

[Thelegend27]

Your body is full of nerves and these nerves can sometimes cause a twitch, ive had many twitches its not abnormal. Now if you started twitching and couldn't stop then it could be something more to it but i wouldn't assume als. If twitching meant als then 95% of the world would have als. Stop worrying, its easier said than done i know, i have a few small lymph nodes that i am completely obsessed with and i google it and it only makes it worse. Google only comes up with the worst scenario possible. If this is something that truly bothers you the best thing to do is see a doctor, ive seen 2 doctors who has said my nodes aren't suspicious and also had a ultrasound and cbc done and were both good and i am still going to see a third doctor because i allow my anxiety to get the best of me. Good luck and try to stau off the internet theres no way to diagnose yourself so i wouldn't even try.

[beatroon]

I think this sounds like a case of running-so-far-to-disprove-ALS-that-you-give-yourself-twitches - a bit of a vicious circle! Twitches can also come from lots of caffeine, as well as from anxiety itself. I think you probably would benefit from seeing a doctor, but about the anxiety. You could explain everything exactly as you've told us here, and I'm sure they would be able to help suggest some more therapy!