Scared and worried

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Gabe G

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I’ve read the stickies, and want to believe all that is said. Is that information from a neurologist? I’ve had a constant muscle twitch on my right forearm/elbow region for about 5-6 months. Two weeks ago I googled it and of course ALS pops up. Since then I have twitches all over my body, calves, legs, shoulders, stomach. My right hand and forearm feel a little weak and get a pain in my wrist when I pick up something with weight. I’ve gone to the gym and lifted weights and showed no sign of strength loss. I always think something is wrong with me or dying and worry that I’m dying or that I have ALS. Can anyone give me their insight if they think I might have ALS?
 

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No, I don't think that you have ALS. The information presented in the stickies is in line with published medical literature, yes.

Twitching in itself is not a sign of anything, and widespread twitching is especially separate from ALS. The hand/forearm thing is most likely a strain or pressure injury. If it doesn't get better with rest and time, it's time to seek medical attention. Meanwhile, there is little point to Googling.

Often, you can "heal yourself" by making sure to stretch, sleep, de-stress, eat/drink healthy, and treat anything that might interfere with your sleep, such as allergies or GERD. But if your fears are getting the better of you, call your primary care doc and ask for a referral to a counselor. Life is way too short and uncertain to spend it worrying about a disease that you don't have.

Best,
Laurie
 

Gabe G

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Thank you so much for the quick reply Laurie. That’s good to know about the twitching. I was freaking out. Saw my GP and he said he also highly doubts I have ALS. Did blood work and electrolytes were good. My TSH was low and iodine was high. Could that have anything to do with the twitching? Was on a low dose of Levothyroxine for Hypothyroidism but looks like it shifted the other direction now.
 

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Yes, either too much or too little thyroid can influence twitching. When you get the meds adjusted, you should feel better, though it may take time as your muscles are jumpy.
 

Gabe G

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Can you explain to me more about the muscle portion of ALS? Does it take days, weeks to come on or does it happen right away? I know I've read its about failure, but I feel kinda weird in my right forearm and hand, which is the same side i have the constant twitch in my forearm. Its hard to explain but but my wrist, hand feel weak and pinky and finger next to it feel like their touching eachother as if they want to curl up or something but i have not problems doing anything with it. I guess im concerned how fast you can show signs of muscle weakness or if this means its slowly progressing into als. Again i have no other symptoms other than the constant twitch for about 5-6 months then turned into full body twitching two weeks ago and the way my arm and hand feel weird as i explained. Just trying to stay relaxed until i see a neurologist on the 15th of April.
 

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This will really help answer all your questions.
The important reason for us writing that link was to relieve those paralysed and caring for those paralysed, from having to repeat things over and over as that is very time and energy consuming.
Fortunately twitching means nothing, which should give you a lot of relief.
You can do a lot to look after yourself in the meantime with sleep, hydration, nutrition, exercise, meditation, yoga and find something productive to do, maybe something voluntary. It can be amazing how these things can help relieve being hyper-vigilant. Come back after you see a neurologist and let us know the result.
 

Gabe G

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My apologies, I did read the stickies, and do not present any of those things other than twitching. What I was trying to get at was for the clinical weakness portion does it gradually happen or does it just fail from one day to the next? I don’t mean to have things repeated over and over but it helps to have some sort of reassurance.
 
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Gabe G

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Just have a quick question. My right hand and forearm feel like it’s jello and weak, pinky and index finger feel like one is on under another bit their not. Just a strange feeling for a couple weeks now. Can do normal stuff with these feelings. Any reason to think als?
 

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No. Probably billions of people are feeling weak right now.

You can ask about hand therapy.
 

Gabe G

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Can’t thank you enough for your time. These feelings are real and scary to me and I’ve never had this feeling, only reason I’m asking and just trying to better understand als. It has definitely peaked my interest and has given me a whole new meaning to life. I will be donating to show appreciation and support to all.
 

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Please go back to the link I posted above.
Please work on getting help for your anxiety about a disease you show no signs of having. Coming here to scratch that reassurance itch or continuing to ask questions to learn more may seem ok on the surface, but folk with ALS and their caregivers on this ALS support forum really can't be used that way- that's why we share that link and ask people to read it carefully and only post if there is something not covered by what is written there.
 

Gabe G

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I am seeking help for anxiety and have gained learned alot on the bfs page. Body twitches have gone down alot with the exception of the forearm twitch that stays constant. Hard to explain, in my right hand, when i open and close it, it feels weak, and gets tired like if I did 20 exercises on the forearm. The pinky and ring finger also feel weak and when i grasp things they get tangled with each other. When i move my fingers like if im playing a piano I can feel the tendons or something moving, super weird feeling and dull pain from the hand up to the biceps area that comes and goes. Feeling better about the twicthes now concerned about my hand. Been like this a around a month on my hand. sound anything like als?
 

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Hi Gabe,

Anxiety like yours about a specific disease is like an itch. You seek reassurance as a way to scratch that itch. Sadly, in some cases, the more you scratch, the worse it gets. The folk here really can't be the ones to keep helping you with this. You've been here quite a few times already asking about ALS, despite the reassurances you're getting. It's time to seek proper help and continue working with your doctor to get to the bottom of your non-ALS issues.

I am closing this thread. Please no more reassurance seeking posts please- this is a forum that exists to support those with ALS and their caregivers.

Please take care, and very best wishes in your search for answers.
 
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