My husband died from ALS and now I’m afraid I have it

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IASAD

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Hi again. I’m trying so hard not to panic but I’m panicking in a major way. It’s all I can focus on and I have a week left until my appointment. I feel like I’m always on the verge of a panic attack.

My twitches have increased to the point that they are constant. Mostly in my right calf (that looks smaller than my left and where I can see a flattened area) but also now in my left.

My biceps always feel a little bit sore. Is this typical for ALS? Like they feel sore and weak. My thumb muscle has atrophied (Other people have seen this) and my hand is achy when I try to pick things up or write.

I know you say it’s about failing, not feeling. Does soreness point away from ALS? It’s like a mild burning sensation in both biceps. How can a muscle just fail without someone feeling weakness first? I know Daniel felt weak before it was clinically diagnosed. But I can’t remember if his muscles were sore.

I also just realized that I’ve had short jerky muscle contractions for a while now. Usually in my legs. I kind of forgot that that might be important.

I am convinced I have this and am just praying with all my might that my grief and anxiety regarding this disease is causing some psychological symptoms. Doesn’t explain my muscle atrophy though. And I’ve never had twitches due to stress in my life.

I’m SO frightened, mostly because this feels like history repeating itself. I have been here before with my husband and I’m seeing all the same things.
 

Nikki J

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The more anxious you get the more you will twitch.

I have no soreness and I don’t feel weak.

i think your appointment is next week? Can you ask your pcp for something to help you through these few days.

i do not think anything we can say or do can comfort you at this point unfortunately
 

affected

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I truly feel for you but twitching means nothing, really it means NOTHING.
I'm starting to feel very concerned for your anxiety that is shifting into panic. Please call your doctor and get an urgent appointment and discuss this so you can get help.
We really can't do anything, but your doctor can.
 

IASAD

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Hi everyone. I went for my EMG and thank God - it was normal. One question though - my fasciculations are mainly in my calves (constant). I did notice my right calf is smaller than my left and seems to have an indentation. However my main weakness is in my right arm and hand, so the doctor only tested that area. He said he could test the leg if I wanted but he didn’t feel it was necessary. I said not to test it because of the pain... but now I’m kicking myself. Do you think I should have gotten the leg tested as well? I’m relieved but still sort of scared.
 

Nikki J

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congratulations. You had the emg in your area of weakness and it was good. Twitching alone is not anything to worry about, body parts are not always symmetrical and dents happen.

look at it logically. You don’t have ALS in your arm. You proved it to yourself with an emg. The weakness there is something else Do you really think coincidentally you would have ALS in your leg at the same time? And again your leg symptoms are really non worrying.

you are, as we discussed before, understandably traumatized by your husband’s ALS. Please don’t let ALS steal more of your life by continuing to worry. I hope they can find the answer to your arm issue. Best of luck!
 
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