Twitching and muscle issues

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PaulyD

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This is an update to an original post that I couldn’t add to. After experiencing twitching (and burning sensations) in November, I saw a neuro in December. Muscle pain but no clinical weakness. Normal exam and normal EMG (I got a grid sheet with a bunch of 0's and "normals" on it).

I then sought out an ALS/neuro-muscular specialist (university teaching hospital) who said my exam was normal and she didn't see any signs of any neuro disease "at this time." She told me to drink pickle juice and she wants to see me again in 6 months.

Since December, things seem to have progressed.

Constant muscle pain. The kind of pain that is so intense that I feel like I need to go to the ER. This is whenever I have to do any task whatsoever. Using a steering wheel, walking, doing dishes. The muscles in my forearms or legs or shoulders or arms tremble and hurt terribly while I'm doing any task and then start twitching after I'm done. Burning pain in shoulder and back. Down arm.

Index finger now seems to always be shaking when in use. I can barely type at work. Fingers aren't hitting the right keys. I can't lift my equipment at work without intense pain and shaking. I always feel like someone is pushing down on my arms when I lift anything. I limp sometimes on one leg because it's very stiff. My muscles look like I'm an Olympic athlete but I never work out. People around me are "jealous" because of how muscular I have become. I've also lost 40 pounds in 4 months. My family cannot get over how tiny my arms and legs look. I can still win against my wife and 24 yr old daughter in arm wrestling -- but will have twitching and severe pain after. Not falling when walking but a lot of balance issues. Struggle to wipe shoes on carpet.

Tons of blood work and it all comes back great. CK level was at 59. Sleep study diagnosed Central Sleep Apnea (started BiPap). PCP sent me to PT and they said every muscle in my body seems tight but they don't know why. Originally neuro has started me on Gabapentin and it has seemed to help with sleep and twitching somewhat -- but not the muscle pain/problems. She's out of options as is my PCP. I will see ALS specialist again in 2 months.

I'm sorry for the long message and bothering you all with things that don't seem to match info in the stickies. I'm not looking for a diagnosis from you all but I'm really just looking for ANY advice because of all the info and experience you have. Does this seem like what happens before muscles fail? Thank you so so much.
 
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It doesn’t sound familiar to me no. I would be asking about seeing a rheumatologist. I doubt the neurologist is going to find the answer so rather than do nothing for 2 months you could set up an appointment at least
 
Thanks for that idea! I hadn’t considered that route yet. I appreciate it.
 
Just a follow up question for anyone who has time… my original neuro (who performed the EMG 5 weeks after symptoms began) isn’t an ALS specialist. However, she said that she has diagnosed over 20 ALS patients in her career and she’s very sure this isn’t ALS. I then went to see an ALS specialist (the head of the department at a major university) a few weeks after that. She did a thorough exam but did not order any tests. She said she sees no evidence of any neurological problem at this time, but wants to see me again in 6 mos (June). My question is this — am I in a limbo phase until the next appointment? How does the diagnostic process work? How/when does someone get the “all clear”? I know I’ve read it takes about a year for diagnosis, but I’ve read some people say they know right away? Thank you.
 
I knew your post would send you down the rabbit hole again. Those who come back to post a PSA for other CIHALS are generally not over the hump themselves and are waiting to have that itch scratched by whomever responds.

You've already been cleared of ALS multiple times. Once and for all, let it go for your own good.

I wish you well.
 
You are not in limbo as regards ALS. There is no reason to still be worrying about it that I (or two neurologists) can see. So the really good news is that you don't belong here.

The "limbo" is as regards other neurological conditions but seemingly there is no evidence for any in particular. So I agree with Nikki that I would seek a rheumie consult and get worked up for conditions in that area.
 
Thank you both for being so patient. I appreciate all of your help very much.
 
So another quick update: to me the twitches seem to be getting worse and I feel weakness in my arm. I was able to capture one on video and send it to the ALS expert in my portal. It is a very long and firm arm twitch that runs from my elbow almost to my shoulder. She had her assistant call me within 20 minutes and say she wants to see me for another EMG, so she’s bumping up my appointment until May 16. They also put me on her cancelation list. Needless to say, I am very concerned. The doctor called to tell me that we should repeat the EMG because the last one was done by a generic neuro and that was 4 weeks after initial twitches. I noticed on my appointment it was booked as “EMG short.” Should I be concerned?
 
No, you shouldn't be concerned because nothing says ALS. How about you stop cruising these forum posts that go back 5, 10, 15 years, hour after hour. This is only contributing to your severe health anxiety. Then, print out your posts and show them to someone you can talk to who will help soothe your unfounded ALS fears.

Please update after your EMG so others can see why twitching does not mean ALS.

Until then, take good care.
 
I just wanted to give an update. I had another EMG done with a neuromuscular/ALS specialist at a major university. She’s quadruple board certified. Both the clinical exam and EMG were completely normal. She said that with 2 tests at 2 points in time she’s very comfortable with saying I do not have any signs of ALS. I asked about all of the twitching (and pain) and she’s convinced a lot of it is anxiety. I’m sorry to waste everyone’s time here and I am very grateful for all of your input and advise. Frankly, I feel embarrassed. I know “something is wrong” but I do believe her that it’s not ALS.
 
Thank you for sharing. Excellent news. Wishing you all the best
 
When you have unexplained twitches and no neurology issue, it is well worth it to explore all you can do with diet, hydration, bodywork, exercise, sleep reduction, etc. -- not simply to reduce the twitches since they aren't hurting you, but to feel better overall.

Those are all concrete things to look at now that you don't have to worry about what you don't have.

All the best.
 
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