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Mtuttle18

New member
Joined
Mar 31, 2019
Messages
9
Reason
Learn about ALS
Diagnosis
04/2019
Country
US
State
TX
City
Beaumont
8 months ago tight pain in both hips. I’ve had Mri of all parts of my body nothing showing

4 months ago pain in mid back around to ribs when standing gets worse as day goes on.

Mood has been depressed I’ve never felt like this in my life. My voice is also super hoarse I can’t sing anymore.

1 month ago muscle twitching.

I’m having an EMG tomorrow in Houston. I’m obviously scared.

Should I be worried?
 
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I would put other possibilities ahead of ALS, but you will know more after the EMG. Try not to worry.

Have you changed diet, exercise, work, bed, chair, anything like that in the last year?

Best,
Laurie
 
Thanks for responding!!

I started eating different when pain started.
Also my legs are twitching in calves both sides.
 
Cramping facilastion syndrome.
So that’s good bad news.

I still worry of course... she didn’t check my voice at all should I be worried? Should I ask for a second opinion?
 
If the EMG was clean and BFS the diagnosis, there should be no reason to worry about your voice in terms of ALS, but if it persists even after hydrating more, using cough drops and addressing allergies, you might see an ENT.

All the best.
 
Thank you so much!
I actually did see an emt says I have dystonia are those connected?
 
Pain

Quick question. I’m suffering from extreme hip pain and fasciculation's in hips and legs, face
I had an emg he poked me with needles and said all was good there was no report.
My voice is also weak been declining for 4 months.
Thanks!
 
Mod note: moved post to already open thread. Mtuttle, if you could just keep posting in this thread. the members here can see all the info in one place- which makes it easier for people to provide informed answers.
 
Your hip pain is most likely mechanical. There may be arthritis in your spine or hips. I recommend seeing your primary care doctor for an evaluation. With the clean EMG, you’re cleared of ALS.
 
Good evening,

11 months ago cramping in hips started and has not stopped.

4 months ago fasciculation

CK tested by PCP, neuro, rheumatology
Over the past 6 months it’s gone like this: 98 , 148, 172 , 370

All other blood normal:

Lost 25 pounds

Emg in March calves had reduced

Does anyone have any experience like this?

Thanks!
 
Moderator note: I’ve merged your current post with your prior thread which was still open, so as to keep the posts together.

I wouldn’t be worried about the CK. It’s a nonspecific test that can be elevated for all sorts of reasons including normal variant, exercise, dehydration, intramuscular injections, up following an EMG, medications, hypothyroidism, and a whole host of other conditions. A value of 370 really isn’t all that high.

You’ve had a clean EMG. You’ve seen a neurologist and a rheumatologist. If they aren’t finding anything worrisome, then why worry?
 
Thank you for following up!
I guess I’m worried cause my levels keep going up and I’m not doing anything different.
Also the cramping and fasciculation keep getting worse.

Thanks again!
 
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