I think I need a 2nd opinion. Re: Split Hand Sign, Weakness, Pincer Grasp

[storgepaga]

Hi all, I've been looking outside and was thinking I didn't need to actually post here. Especially that I know it can be difficult esp for the PALS to entertain posts.I appreciate the effort and have truly seen how helpful the forum people are though I wish this kind of forum did not exist---because I hope to see a world without ALS and other terminal illnesses.

I am 32, female, mother of 1 and wife of an awesome hubby! residing in the Philippines where I found out ALS drugs and assistance is almost nada. 1 yr + ago I started noticing I cramped a lot, I would ask my cousin (who lives with me) if she experiences them a lot and very severely that it would stiffen and she'd say she does a lot so I assumed it was nothing. Bad sitting or posture perhaps? Then just half a year ago I got numbness and tingling which I know only a few ALS patients experience onset per read-ups. Things went on from there, I got twitches, very strong ones everywhere, then my husband noticed me not closing lids (I just figured recently it seems I can't close them tightly), having to pause when I talk bec I can't breathe and recently notice sudden weight loss and my hand looking like a "split hand" on my left side.

I also tried the pincer grasp on my left hand and instead of creating the normal circle my index finger bent difficult to reach the thumb. I can still button things but opening caps have been difficult and a failure sometimes with my left hand. My feet also makes these slappy sound when I walk. I noticed I easily choke on chunky food lately. I got cleared from MS ,RA, thyroid etc from many tests. I saw Mark 12345'sstory here about his symptoms and split hand and seemingly found similar things with him. He was first dismissed here but eventually came back with a post on possible MND per the team of neuros who checked him. To say my fears are overflowing is an understatement.

My EMG says radiculopathy/denervation or pinched nerve per conducting doctor and I will go back to my neuro for her say. I wouldn't wish the disease on anyone and I hope it can be erased from the Earth and I am scared. I admire the brave beings here. I would like to know if it would be best to get a neuromuscular expert to check me instead of an adult neurologist? To get a 2nd opinion? I saw stories of misdiagnosis of a pinched nerve and a lady who had a similar hand to me and a pinched nerve too who got misdiagnosed and eventually turned into ALS after so many appointments etc. Sorry it's a bit long but I thought I'd give the good details so reading is one-effort. My heartfelt thank you to everyone here and I pray the cure will be available soon!

*please see photos and the difference from the left hand

 

[Bestfriends14]

Hi there,

None of what you've listed is indicative of ALS, nor do you have the "split hand" in ALS that is caused by loss of function. You got dressed this morning, correct? If you had muscle loss in your hand due to ALS, doing up buttons or zippers would be very difficult and it would not be sometimes, it would be all the time, progressively getting worse..

If you think it will make you feel better, go seek advice from a neuromuscular specialist, however, you could be taking that appointment from someone who needs it. I think you can table ALS as a concern; you truly don't evidence symptoms. As for Mike12345, there was no confirmation of his diagnosis as he was reluctant to share the diagnosis letter, so to look at his case would not be an accurate comparison.


Good luck to you and stay safe.

 

[lgelb]

Mike12345 reported being scheduled for a muscle biopsy, suggesting that an alternative diagnosis such as myopathy was a strong possibility.

By all indications, you have a radiculopathy, which is very common, and your symptoms probably can be improved with attention to posture, exercise and physio.

Best,
Laurie

 

[affected]

Just wondering if it matters that all identifying information is on these documents uploaded?

 

[ShiftKicker]

Removed, thx for the heads up. OP, if you would like to re-post, with your name and identifying info obscured, that is fine, although you have received informed answers from experienced members, based on your posted (now removed) results.

 

[Clearwater AL]

When you or other posters refer to a previous Thread (Mike12345
for example) read the entire Thread complete.

Where we have asked for further info from an EMG or consultation
and they don’t further reply or they come back with a different subject,
new symptom, question, they found out from EMG or consultation…
they don’t have ALS.

Amazingly… some almost still act in disbelief or even feel
disappointed. Like one of our very ALS knowledgeable members
may disagree with the diagnosis from their Neurologist. Amazing.

Finally, posting pictures on this site accomplishes... nothing.
No one here is going to make a diagnosis just looking at pictures,
that's the Neuro's job in person.

 

[storgepaga]

I didn't notice I wasn't able to crop it. Will reupload without the name. Thanks for noticing!

 

[storgepaga]

Hi All, this is my reuploaded EMG. As for Mike,I saw his reply on one thread, maybe you didn't find it but here it is as well. I don't know if I'll be able to convey this better as English is not my first language but I believe and understand that with experience the admins and PALS themselves have the experience that visitors like me don't have here and I truly respect that and Mike's case may be on of the few atypical cases and I am so terrified that the journey of check-ups and many symptoms seems similar with him. Given the rate of misdiagnosed as pinched nerve then it was ALS all along based on articles and PALS I've read plus the atrophy I can see in my palm and right arm seemed strange. I've compared it to previous hand photos because I do nail art and that's where I noticed the difference. I have decreased ability in things with my hand and I truly wanna trust this radiculopathy diagnosis. But reading threads and patterns of people who came back here after being in bliss or assurance of not having it leaves a pang in my heart. I have no intention to offend but I'm in my most prayerful thinking that this is not an erroneous delay or error or ALS betraying by mimicking other friendlier conditions. I have a 73-year-old mama and I'm her only child, my child is also under the delayed speech spectrum at the age of 8, a husband with OCD and GAD, I know we all have things to care of and these things I mentioned are what keeps me going and I hope no terminal disease comes afflicting me and anyone anymore. We're not even upper middle people class in a 3rd world country.

I do believe with all sincerity that your dedication is banked rightly in helping people with ALS, possible ALS, related MNDs, and anxiety-ridden people that should live life and strive like the strong people here. I will still get treatment for my radiculopathy and hope to see improvement from there. I also still have to find a neuromuscular doctor here and it seems there is 0 in my city through my extensive search which is a reflection of our poor health system. I see you as the familiar faces here upon reading and I admire you all for that. Thank you. I will be in touch with my neuro next week.

 

[Bestfriends14]

Please go back and read Al's response to you. Further, read Mike12345's posts, all of them, plus read the responses. You've taken a snippet of the entire dialogue and so you're trying to hold this one person's post as the be all end all. Mike was unwilling to come back and share his official diagnosis on the main forum. As such, his word cannot be construed as totally true. This forum has had people fib about being diagnosed before. I'm not sure why people feel the need to pretend to have this disease, but it's quite sad.

Again, please let go of having ALS as you do not evidence this disease. Should you go meet with a neuromuscular specialist, please come back and report their findings. Until then...

 

[storgepaga]

Hi, having people pretend they have it is disgusting. I understand worry, but to pretend is too much and that's where you are coming from. Mike not going back might be distraught, we may never know, but, as you've said we can't guarantee given the experiences you've had within this community. And having any disease is something I truly don't want. I will be reporting findings here. I really appreciate you all taking precious time in answering my questions. So far neuromuscular doctor search is like a hunt but I'll be going back to my current neuro. You all stay safe!

 

[storgepaga]

This is the video of the split hand I saw, my left hand, when fingers are bunched like my 4th photo is one of those that I had some basis on. The lines on his palm nearest to palm and index finger are more pronounced because of the atrophy but he can still use his hand. Those lines are more pronounced in my hand as well. I've always had wrinkly hands but the lines under the thumb and finger are more pronounced now vs the right. The space between the thumb and index is also deeper right now. I did read that split hand is not exclusive to ALS but it is super rare with another disease, more common and even being considered as one physical sign MND. What got me worried is that my pinched nerves are where the UMN part would be. I could go on and on but you guys are right somewhere that the doctors will be the ones to determine it. The dread, the waiting, you guys were there. I am sorry. I will do my best to go on be relieved. Thank you so much again! I appreciate it.

 

[lgelb]

You were ready to leave, but couldn't resist coming back...the hallmark of health anxiety. Seriously, get help. You're spinning out a web with no foundation beneath it.

As BestFriends points out, the split hand sign entails loss of function secondary to muscle wasting. And your EMG was normal. You don't have ALS. See your doc about PT and addressing your health anxiety. To help you move in that direction, I'm closing this thread. All the best.