Symptoms and questions

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HMears

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Hi All,

what a great site and good support, I've read a lot already.

late last spring I started to notice tightness in my forearms, for no explicable reason. Also had a few calf cramps but didnt think much of it as I've had those before.

Early august I had a period of frequent twitching of my thumb pad muscle. Then when I bent it back I noticed a substantial crevice/dent in my thumb muscle from the base of my thumb to the wrist.

Went to a dr and he didnt think it is CTS since I have no other symptoms/signs of that.

The thumb twitching ended after a couple weeks or so, but I have them all over but only occasionally.

I was sent for an EMG/NCS on that arm and came back normal.

But I still have forearm tightness which hurts pretty much daily, including right now, and have the dent in my thumb muscle, with occasional calf cramps.

So far have not noticed any strength issues. I only ended up here because searching for these symptoms brings this condition up. This is very stressful.

No one seems to know what to look at next.

So, I decided to ask this community. If there are other conditions that can cause this or if it looks like this one, maybe some ideas would help.

Thank You

Hank
 

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KarenNWendyn

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Hank,

The normal EMG rules out ALS. I assume you’ve seen a neurologist? What did s/he say?

Some ideas — ask neurologist whether it would be advisable to get MRI scans if brain and cervical spine. If these come back normal, then I would ask about a referral to physical therapy and maybe a rheumatologist.

Forearm tightness could end up being something as mundane as tendinitis. I wouldn’t focus on the twitching.
 

HMears

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Thank you, I read the sticky (couple times) and have also read cases here where PALS got multiple clean EMG over a year or more, then ALS diagnosis. Remember I have thumb muscle atrophy as well. That one was twitching a lot for a couple weeks then stopped. Not sure when the atrophy appeared as i have to flex the thumb back to reveal it but it is definitely there.

The forearm tightness started way before the thumb, and was strange never had it before. Now it's every day.

The muscle loss and twitching combined with the forearm cramping is whats so concerning.

thank you again for the advice...
 

HMears

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while i wait for my other reply to get approved, I forgot to answer a couple questions. The MD who did the EMG/NCS on that one arm is not a neuro and offered no advice. My GP has nothing to offer, didnt suggest any blood work or imaging. No one could explain the fascics and muscle loss of the thumb and arm / leg cramps.

I'm only here to inquire if my symptoms could be early als, because I've read examples here that contradict each other for example clean emg's followed by diagnosis, and no weakness early, etc so my partner advised to just post and ask, so I appreciate the thoughts and replies. I am not rich but will make a modest donation to an ALS organization (suggestions?) as a thank you.

I realize that there are only two ways to rule this out, one is to definitively find another cause (and no one seems to know where to look), the other is to wait a year or two and see if things progress.

thank you
 

lgelb

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Why not test the hypothesis that the forearm pain is something else by asking for a PT referral and seeing what the PT's eval comes up with? Daily stretches and ROM exercises that include bending the elbow couldn't hurt, either.

Not sure who did the EMG, but certainly if PT isn't fruitful, you could ask for a referral to one as a next step. Boston is a hotbed of resources.

Perceived thumb atrophy is common but if you see a neuro s/he can validate whether it is that or normal asymmetry.
 

HMears

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Perceived thumb atrophy is common but if you see a neuro s/he can validate whether it is that or normal asymmetry.
Unfortunately it's not perceived, it's a large indent 2" long. My GP said "that's definitely wasting". Nothing on the other hand. But that's the only wasting that can be seen. And it's exactly where the fascics went on for a couple weeks as well.
 

lgelb

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But for the atrophy to relate to ALS, the atrophy would signify dead nerves, which would manifest in weakness/immobility. So your account strongly suggests another cause both for that reason and timewise.
 

Nikki J

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Without knowing the specific cases to which you refer the usual clean emg explanations are 1 most commonly upper motor neuron onset which would be found in clinical exam. 2 unrecognized weakness which careful reading of their history reveals or 3 rare but happens people who turn out not to have ALS. We have had several cases where a doctor told a twitcher it was ALS and it wasn’t when they went to neuromuscular. We also have had people who fibbed about their diagnosis. Sad but has happened.

If your doctors can’t explain your symptoms a PT is a good idea We also live in a place with great doctors. If your pcp can’t figure it out ask to be sent to someone who can. If you feel it is neurologic ask for a neuro consult.

Fwiw it doesn’t sound suspicious for ALS to me. You need to pursue this with your doctors rather than argue more here
 

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I second all the above advice. I also want to emphasize that atrophy is not specific to ALS. A number of different conditions can cause atrophy. ALS os one of the least common causes.
 

HMears

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thank you for the advise. nikki not arguing anything, just couldnt find anything to rule this out since I have muscle loss (especially where it is) which included fascics. since there's no sensory loss and was told not cts . plus the forearm issues and occasional calf cramping. als kept coming up in searches on my basic symptoms, and nothing else really does. I hope you're right and of course I am also told this is rare but also cant be ruled out so it was suggested I ask on als forum. thank you for the replies.

god bless

hank
 

Bestfriends14

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Hank,

Just because you perceive your thumb to have atrophy, does not mean that it points to ALS. I have an atrophied left shoulder from a car accident seven years ago and I've not had full use of my arm since then, hence the atrophy. I do not have ALS.

You've yet to say any symptoms that do sound like ALS, which is a very good thing.

Take care and good luck to you.
 

HMears

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Just an update, I have been tested positive for late Lyme infection (long standing). This is one of the conditions on the mimic list someone here pointed me to. It doesnt explain the very real small but deep thumb atrophy, but it explains a lot else.

Thanks for this board's helpful people and the DIHALS answers!
 

lgelb

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Glad you have a plausible explanation. The thumb seems to be one of the bits that quite often shows significant asymmetry without there necessarily being clinical significance, for me and many others.

Just a word of unsolicited advice in re the Lyme -- stay away from the rabbit hole that is "LLMDs." Establishment medicine may not all have the answers, and so you may need to help yourself feel better through a variety of non-interventional approaches, but you keep a lot more of your money and won't be on antibiotics / herbs of dubious safety/efficacy for the rest of your life.
 
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HMears

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You are so RIGHT about "LLMD"s found that pretty quick through research.

As to the thumb, it had fascics on that same area for a few weeks and then I noticed the dent (couple months ago now). Which was probably there sooner than I saw it because I dont usually move it that way. I Dr Googled that and of course als comes up a lot which brought it here. Only God knows what is up, really, but the lyme result is vy helpful.

Thanks again, take care
 
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