Old 11-17-2018, 02:54 PM #16 (permalink)
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Default Re: Absolutely devastated

I plan to. I still am really concerned about my muscles twitching when I'm standing or they're pressed up against something and flexed. That is a pathological form of twitching. I'm just so scared to find out and for my life to be over.
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Old 11-17-2018, 02:59 PM #17 (permalink)
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Default Re: Absolutely devastated

No, twitching is not pathological. You are sorely misinformed about what comprises ALS. Please read the sticky Shifterkicker so kindly provided. May I ask what background you have to be diagnosing yourself with such a rare disease? Are you a neurologist? If not, what a waste of your time to get so worked over a disease no one here thinks you have. A neurologist will have the same opinion of you not having ALS, as well, I'm sure.

Again, no need to post further until you call a doctor, get a thorough check up and then, and only then, post an update. Enough of the dramatics. There are actually people here with the disease; try to remember that.

Take care and good luck to you.
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Old 11-17-2018, 03:14 PM #18 (permalink)
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Default Re: Absolutely devastated

So, you have it on the word of a gynocologist that you may have muscle loss. While I'm sure s/he's a very smart person, I wouldn't go to an expert in obstetrics for advice on neurology. And keep in mind that a cough can indicate everything from a cold to stage 4 lung cancer. Your symptoms are all over the place and should be looked into, you just seem to have gone from a cough straight to terminal cancer. There are a myriad of things it could be, the vast majority benign. You have just given birth, a draining and traumatic experience. Your son is a month old and keeps a weird schedule leaving you sleep deprived, malnurished and dehydrated. You have a lot going on. Don't waste what should be a happy time for your family worrying about something you don't have.
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Old 11-21-2018, 06:07 AM #19 (permalink)
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Default Re: Absolutely devastated

My neurologist appointment is this morning at 10 am. I've been an absolute wreck since last night. I've sobbed to my husband and I'm on the verge of throwing up all the time. Maybe I shouldn't have made this appointment for the day before Thanksgiving.

I've don't self tests for carpal tunnel and I don't have it. So that means it has to be als. The atrophy in my hands is undeniable and has to have a cause. If it's not carpal tunnel then it's something bad. What still baffles me is that I wouldn't have found this if I hadn't been looking for it. My hands feel completely normal. I realised in my first post I put that I had weakness in my hands, but that should have said no weakness. I have no weakness in my hands. So without weakness how did I get atrophy in my hand?
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Old 11-21-2018, 11:45 AM #20 (permalink)
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Default Re: Absolutely devastated

I hope your appointment is/was reassuring. Jumping from "no carpal tunnel" in your view from ALS is a huge leap, and there are many reasons for atrophy beyond CTS.
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Old 11-21-2018, 12:04 PM #21 (permalink)
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Default Re: Absolutely devastated

It went ok. He wouldn't do an emg until I have some lab work done. Which I'm worried sick will come back bad.

He said he doesn't think it's als. He said my reflexes are spot on and normal. Said my leg shaking is no big deal. He didn't really address my twitching much. I asked if it could be caused by stress/anxiety and he kind of acted like it couldn't. He said it can be caused by many things.

I am worried though because he said he didn't know if my hand was muscle atrophy. He said he has nothing to compare it to and that my hand could just be like that. I've been looking at my mom's hands and when she flexes the way I do hers look almost exactly the same. It's weird that it only does it when I flex my hand.

I'm also worried that he didn't ask me to walk on my heels or toes as part of the clinical exam. I can do those things but I don't know why he excluded them. And he didn't look at my tongue.
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Old 11-21-2018, 01:12 PM #22 (permalink)
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Default Re: Absolutely devastated

There is no definitive test for ALS and your doctor says you don’t appear to have ALS. Forum members agree that it would be highly unlikely for you to have ALS. The tests the doctor is doing is to determine if something else is causing your issues. Relax and enjoy Thanksgiving.
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Old 11-21-2018, 01:22 PM #23 (permalink)
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Default Re: Absolutely devastated

If your mom's hands are similar, it could be a normal variant that you inherited.

Again, there is no reason at all to suspect ALS here.

Pregnancy twitching during/after can be a lack of iron.
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Old 11-21-2018, 03:40 PM #24 (permalink)
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Default Re: Absolutely devastated

I did have low iron during my pregnancy. Got my cpk levels back, 43. Range is 30-200. That sounds bad. Looked it up online and found an article that says low cpk can be caused by muscle wasting.
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Old 11-21-2018, 03:50 PM #25 (permalink)
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Default Re: Absolutely devastated

That is a normal value and women tend to have lower values than men.

You saw the neurologist who told you he didn’t think it was ALS I am going to close this thread. Please do not post again until you have either emg results to report or a diagnosis which we all believe will NOT be ALS

Nothing we say is going to reassure you and our resources are limited
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