Split Hand

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Pepper2500

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Hey y’all, I am super worried I could have ALS . I am 26 years old and have had somewhat boney hands, but here recently began to look at them and worried I have atrophy . I suffer from a genetic disorder called Myoclonic Dystonia, but it’s not supposed to cause atrophy . I am worried since I do have a muscle movement disorder that my symptoms for ALS are the same . My hands feel weak, but I can still do everything with them . I am so worried my hands are showing signs of atrophy . Not sure if they’ve always looked like this . My left hand when I am stretching fingers and all all the way out looks like I have atrophy on the thumb muscle, but looks normal with other hand positions . Worried there are signs of atrophy in both hands !

Also my left thumb muscle looks at tad bit smaller than my right dominant hand
 

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lgelb

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From Medline Plus: "About half of individuals with myoclonus-dystonia develop dystonia, which is involuntary tensing of various muscles that causes unusual positioning." That could be what you're interpreting as atrophy, which I don't see. By all means consult your neurologist on this, but I don't see any reason to think of ALS.

Best,
Laurie
 

Pepper2500

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Thank you, I don’t see a neurologist now. All the medications they want to put me on have bad side effects, I’ve been able to manage it my own. It’s not as bad as some with it. I am right hand dominant and I remember doing a simple nerve test with my PCP last year, because I was dizzy and she had me squeeze her fingers with both hands and said my right was a little stronger, so now that has me paranoid that it is atrophy in my left . I am wondering if I need to order a EMG just to help ease my mind .
 

Pepper2500

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So I went to see my personal trainer today. I just started working out . I can lift 10-15 lbs in dumb bells on each arms. He said my left arm is fattier and my right arm is leaner . My right arm is my dominant arm . He said he saw nothing alarming . This scares me because I started the twitching in my right arm two arms ago and now it’s widespread to my tongue. I can’t get an EMG or see anyone until 5 months . Worried I have muscle atrophy in that arm. My left arm has the mole on top of my shoulder there
2F2D104E-98A0-4A8B-8305-4D77ED7CDE54.png
 

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Hello- I have moved your post to your already open thread. Please keep posting here, as it keeps everything together and makes it easier for people to answer if they seem what has already been discussed.

If your personal trainer did not see anything alarming, then it's likely there is nothing to be concerned about. They know bodies, and I am sure this person has observed you in the past and would have noted any serious changes or deficits.
 

Pepper2500

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This is my first time working with them . I am worried it’s not just my left is fattier it’s that I have muscle loss in my right . I’ve been twitching for two years and because of that I am concerned about ALS . So if have no clue if it’s always been like this . I can still do everything normal though . But I am scared I have ALS . My primary care wasn’t fazed by my twitching but they haven’t seen my arms .
 

Nikki J

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Pictures are generally unhelpful but I certainly don’t see anything that looks abnormal. It sounds like your dominant arm has less fatty tissue because it naturally has more muscle. Please go see a doctor get examined and stop posting pictures
 

Pepper2500

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I just started working out and didn’t notice until I flexed . I can’t flex my left like my right . With me not flexing you really can’t tell much of a difference, but when I do flex you can . I haven’t worked out in a few years . My new primary care blew me off, but referred me to neurologist for my genetic condition ( Doesn’t cause muscle atrophy) . So I am seeing my old primary care to do another clinical weakness test . They told me if I am lifting 10-15lbs above my head and still do normal thing there’s no way I am clinically weak .. I am twitching all over the place .

Also my right hand gets number super easily.

Also does muscle atrophy start in the upper arms with this ?
 
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Bestfriends14

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Please stop and go back to your PCP for further answers to your questions. This is not a general health forum, but a forum for those with ALS or their caregivers, of which you are neither. Further, this subforum is for folks to ask a question or two and when given a reply, to move on and seek help from those who give it (PCP, for example). This would be the case for you as you do not evidence ALS one tiny bit. Asking about mid-arm atrophy is something to discuss with your doctor. We have no clue why your arm has perceived atrophy in the middle of it when you can use it perfectly fine.

I do truly wish you the best and hope you can let go of this consuming worry of you having a terminal illness.

Take good care.
 

Pepper2500

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Thanks for you comment. I understand and will ask all these questions to my PCP . I have horrible health anxiety and I truly hope I don’t have nothing of this nature . I see my pcp on the 8th. If you’ll allow me too, I’ll post an update then.
 

lgelb

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For your own sake, I would seek counseling for your health anxiety, which can easily ruin your life. When you see your PCP, you could ask for a referral.
 

Pepper2500

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I started and anxiety medication and I plan to follow through with a therapist sometime this month . It’s ruining my marriage. My husband keeps telling me I don’t have this disease, buts it’s hard to believe because I haven’t had an EMG to rule it out . I am just no getting past my hands and then when I seen my right arm look leaner according to my new personal trainer it freaked me out because that arm has felt weak and it’s feels harder to do things, but I can still do them . So I am hoping that it’s just my anxiety causing me to twitch and that my right arm is just leaner because it is stronger . Thanks for your reply !
 

Bestfriends14

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Knowing full well you have health anxiety and coming here to get handholding for that anxiety is really not fair and a bit cruel, do you not agree? How many other terminal illnesses have you thought you had?

Please stay the course with your medication as what you have is treatable, whereas the folks who actually do have ALS are not as blessed to have something to treat their disease. Think about how blessed you are to know you have avenues out there that will get you well if you truly want that. Lucky you.

Again, take good care.
 

Pepper2500

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I am sorry, that’s wasn’t my intentions. Just because I have health anxiety, doesn’t mean that I don’t actually have an issue . I have to have a clinical test to rule out that I don’t have ALS. Speaking with two other ALS patient local said all my symptoms point towards it . That freaked me out . If I do have it, who will be a bit cruel then ? Thanks !
 

Clearwater AL

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Pepper, I have refrained from posting anymore, some felt I was too blunt, I have Split Hand
Syndrome…you don’t. So, let’s review your thread…

“I suffer from a genetic disorder called Myoclonic Dystonia. (That's a diagnosis.)

“My new primary care blew me off, but referred me to neurologist for my genetic
condition ( Doesn’t cause muscle atrophy).” (Sentence above.)

“but referred me to neurologist”

Apparently the neurologist did not see ALS… you were apparently
dismissed without need for an EMG or I’m sure you would have gone there too.


“I can’t get an EMG or see anyone until 5 months”

That’s because there was no need for immediate follow up concerning ALS.

“My husband keeps telling me I don’t have this disease, buts it’s hard to believe because
I haven’t had an EMG to rule it out,”

Your own husband !

“So I went to see my personal trainer today. I just started working out . I can lift 10-15 lbs in
dumb bells on each arms. He said my left arm is fattier and my right arm is leaner . My right
arm is my dominant arm . He said he saw nothing alarming.”

“So I went to see my personal trainer today.”

He probably agrees with your PCP, husband and neurologist.

He said he saw nothing alarming.” Your own personal trainer.

“Speaking with two other ALS patient local said all my symptoms point towards it.”
That’s rare, for you to speak to two local ALS’ers… being many here only seeor even speak to
another ALS’er at clinic. There numerous cities, towns even counties that have no one with ALS.

This is a rare disease

I think it would be wise to close your thread out for your mental health and seek professional
help for Health Anxiety and even hypochondria.

There is really nothing more this forum can do for you.

No need to reply. Let it go as far as here is concerned.
 
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