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Ericalyn

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Hello everybody, I have a question that I felt like couldn't be answered in the Stickies.

For about 3 weeks I have had issues where I am walking, and if I do a quick turn on one leg, I stumble a bit. I have gotten out of bed at night to have my legs shake uncontrollably, or I stumble around the room. I always feel unsteady.

Is this a sign of clinical weakness? I do not ever feel dizzy, it's just like my body won't work with me. I have had a clean MRI and talked to a neurologist about my concerns. She will not take me seriously because she says I'm only 30, and the only people who get ALS that young are familial ALS status or were in the military. That does not seem to be true from posts I have seen on here.

I have read it's about completely failing at something, but I have also talked to people where they said their strength just went down gradually and was very subtle.

I've had the myoclonic jerks (I don't know if that's a symptom) and I've also had the fasciculation, which brings me to another question. I went from having twitches 24/7 to only having a few a day. Can this happen in ALS? Also, is it possible to feel deep aches as a result of progression of symptoms?

Thank you for taking the time to read. God Bless

Erica
 

lgelb

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Erica,
ALS would be at the bottom of a long list, the highest probability being that nothing serious is amiss.

I would go back to your PCP and talk about basic blood work, sleep, stress, nutrition, hydration and exercise. If it is worse when you wake up, I would certainly look at hydration in the evening.

Best,
Laurie
 

Ericalyn

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Anybody else? I’m just scared cause I talked to an urgent care doc that said I should be worried
 

Nikki J

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Instead of talking to doctors ( online? How?) you need to go to your pcp in person and have a proper exam. Your symptoms are so non specific it could be anything or nothing. What you are describing doesn’t seem familiar to me.

You need to go get examined and if there are issues found during your exam your pcp will make a plan with you.

No one here is going to say anything else at this point.
 

Ericalyn

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I have an EMG scheduled. Is only 2 months of fasciculations too early to pick up denervation? I know twitching is not diagnostic of anything. But I do have weakness and I’m not sure if it is clinical or perceived.
 

ShiftKicker

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No, it is not too early. ALS causes neuronal damage, which in turn causes faciculations. If the faciculations are due to ALS, the EMG will pick it up. In fact, EMGs pick up damage before some people show symptoms in areas tested.
 

Ericalyn

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Thank you very much ShiftKicker. God bless
 

Ericalyn

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I just wanted to say I admire each of you. I’ve seen how many times some of you have posted to people who are paranoid. We ask over and over never satisfied, yet y’all reply with patience and grace. I don’t think I would be as strong. Y’all are amazing.
 

Ericalyn

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Early weakness

Is it possible to have joint and muscle pain at the start of ALS? I know pain is not associated with ALS. But I have read some posts that confuse me.

Also, I only had an EMG 1 month after twitching began. Is this early enough to detect denervation?

Thank you
 

KarenNWendyn

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Re: Early weakness

If you have joint and muscle pain, that is not ALS. See a rheumatologist, or see your PCP to refer you to one.

What did your EMG show?

Do you have loss of muscle function failure? E.g. slurred speech others can hear, inability to stand on toes or heels, difficulty peeling tabs or fastening buttons? (Assuming you could do those things previously).

If you don’t have muscle function failure, you don’t have ALS.

If your EMG was clean, you don’t have ALS. And no, it can’t be done too early, especially if it was done on an area with twitching.
 

ShiftKicker

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Mod note- Erica, I've merged your new thread with your old- it's still open. It helps to keep everything in one thread for people, so you can just keep posting here on your original thread.
 

Ericalyn

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Karen, it was normal. She only stuck me in 3 times. Sorry if this sounds stupid, I’m just concerned that it was not enough.

I have problems with my grip, but the doc says it’s a gluten allergy. She has been dismissive with me from the start because I am 30 years old and she says my age and it not running in my family excludes me from diagnosis.

I wanted to search for a second opinion but I do not have the money.
 

Bestfriends14

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Erica, there is great news in the posts you have written; nothing you have written has indicated ALS. Not your symptoms, not your clinical exams, and not your EMG. Why, if you have none of the symptoms, would you still continue to seek a diagnosis of ALS?!

If members on this forum had heard such wonderful news, they would be elated. Your doctor told you what she thinks it is; is there a reason you're choosing not to follow her advice?

You do not have ALS, as evidenced many factors, and that is truly wonderful. My husband would wish to have such good health as a treatable thing as gluten intolerance. Please be grateful for this instead of searching to get diagnosed with a disease you really, really do not want.

Best of luck to you and take good care.

P.S. you were tested enough.
 

Ericalyn

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You’re right. I’m so sorry. I have let my health anxiety get in the way of caring how other people feel. If my loved one had it and I had to read posts like mine, I would not handle it so well.

Please accept my apology, I will not post again.
 
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