Old 11-17-2018, 07:36 AM #1 (permalink)
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Default Absolutely devastated

I'm just going to keep this short as I'm already 99% sure I have ALS and just want someone to confirm that my hands look like split hand syndrome.

My symptoms started back in June of this year when I was pregnant with my son. I started to have random twitches all over which I still have today. I've noticed recently that they seem to be more confined to my legs and feet now. I also sometimes have a feeling like bugs are on me or a tingling similar to when a limb falls asleep but I've seen PALS in here that have the bug feeling so I know it's ALS related. I thought the twitches were from being pregnant but when I gave birth in October they didn't go away. My leg also twitched yesterday when I was standing which I know is ALS related because muscles don't normally twitch when they are flexed/in use.

I also have what I'm pretty sure are brisk reflexes. My legs also shake when I bend my knees if I have my legs out straight on front of me and lower them. It happens especially if I so it slowly. Like imagine sitting in a chair with your legs out straight and bending them, my knees/legs shake.

So now the worst symptom: split hand syndrome. I went to my gyno yesterday and asked him about the dents in my thenar muscles on both of my hands and he said it looked like I'm losing muscle there. I can only see it when I flex my hands into an L shape. I know its not carpal tunnel as I have no symptoms at all. Split hand syndrome is 100% only associated with ALS. My thenar on my left hand also twitched so bad a few months ago that it was involuntarily moving my thumb. I don't remember if moving it stopped it or not but I don't think so, which is know is bad news. I've attached photos of the atrophy in my hands

The strangest part is that I have weakness in my thumbs or hands even though I have lost so much muscle. But u found this article that states you can have atrophy before weakness in ALS:

https://emedicine.medscape.com/artic...72-clinical#b1

So someone please confirm that my hands are split hand syndrome. I know I need to go get diagnoses but I'm scared to death. I'm about to turn 30 next month and I have 2 kids under the age of 2. I've only been married for a year. I feel like my life was just beginning and now it's over. I can't sleep at night, I'm up all night sick with worry. I'm on the verge of throwing up.
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Old 11-17-2018, 10:53 AM #2 (permalink)
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Default Re: Absolutely devastated

I also forgot to mention that I did an ancestry DNA test and found out I have a gene that makes it over 1.5x more likely that I can get ALS and only like 10% of the population has the gene which makes it worse.
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Old 11-17-2018, 11:02 AM #3 (permalink)
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Default Re: Absolutely devastated

You started with random twitches and a “feeling “ like bugs. You think your reflexes are brisk. You haven’t noticed weakness. You haven’t described failure. Yet you are “99% sure” you have ALS.

Well listen. I’m am 100% sure you don’t.

For one thing, you can’t accurately test and assess your own reflexes. And even if you could, please realize that some people have hyper reflexes as a normal variant.

Then, if you actually read the sticky at the top of this forum, you’d know that ALS is about failing, not feeling.

Here’s the sticky. READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Dents are meaningless. Twitching is common, nonspecific, and meaningless.

And no, your photos do not show split hand syndrome.

If you do not belive me, see a physician for an exam.
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Old 11-17-2018, 11:02 AM #4 (permalink)
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Default Re: Absolutely devastated

You are 99 percent sure you have a fatal disease, but you haven't seen a doctor?



I'm 99 percent sure you don't have any disease of any kind at all. Sounds like you're recovering from birth.


Please read the sticky post stuck to the top of this sub-forum about "Read before Posting."
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Old 11-17-2018, 11:13 AM #5 (permalink)
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Default Re: Absolutely devastated

Pictures are not helpful I don’t see split hand but that would be up to neuro. It is untrue that true split hand is 100 per cent ALS

Also ancestry.com does NOT test for the FALS genes. There have been people who have reported both SOD1 and c9 anomalies from this test but that is not the same as the FALS genetic tests for SOD1 and c9orf 72. The increased risk 1.5 x is not well supported by science but would still be miniscule. And the 10 percent of PALS who really are FALS ? Our risk is not 1.5 x the general population. It approaches 100 percent. For example in my family my mom and three siblings had it and died, my sister and I inherited the gene. My sister is dead. I am sick

If this supposed gene occurs in 10 percent of the general population it clearly does not have much of an effect or ALS would be rampant

See a doctor and get an exam

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Old 11-17-2018, 11:14 AM #6 (permalink)
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Default Re: Absolutely devastated

Quote:
Originally Posted by Silvermaple View Post
I also forgot to mention that I did an ancestry DNA test and found out I have a gene that makes it over 1.5x more likely that I can get ALS and only like 10% of the population has the gene which makes it worse.
Great! Youíre letting Ancestry DNA diagnose you????

The incidence of ALS is about 2 in 100,000, or 0.002%.
Assuming that gene makes you 1.5x more likely to get ALS, then your odds have risen to about 3 in 100,000, or 0.003%.

Sorry, but Iím not impressed.

If you can afford the Ancestry DNA test, then you can afford to see a doctor.
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Old 11-17-2018, 11:39 AM #7 (permalink)
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Default Re: Absolutely devastated

Ah I think I probably found your ancestry reference. The 1.5 increase statistic appears based on 1 Dutch study. Even if this were confirmed in other broader studies the key point here is that is was an association found in LATE onset ALS. Completely inapplicable to a not quite 30 yo

https://jamanetwork.com/journals/jam...article/793200
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Old 11-17-2018, 12:06 PM #8 (permalink)
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Default Re: Absolutely devastated

Sorry, I should have provided the link to the genetic info:

https://www.snpedia.com/index.php/Rs3825776

For reference, I am G;G making me more than 1.3x more likely to develop sporadic als. The fact that only 10% of the population have this particular allele makes in uncommon, therefore more significant.

I have read the sticky but the atrophy in my hands is undeniable. My gyno said "it looks like muscle loss". He was concerned about carpal tunnel though. Which I guess now that I think about it, could be a possibility. I did have some pain in my wrists and right arm when I was pregnant. Tingling in fingers when chopping vegetables, that type of thing. My dad and mom both have somewhat similar dents in their hands too but not nearly as bad as mine. It's just really scary.

Also, I thought benign twitches couldn't happen when the muscle is flexed. As I said before, my calf twitched yesterday when I was standing up. That wouldn't happen with benign twitching. It also happened again today in my other leg when I was standing.
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Old 11-17-2018, 12:11 PM #9 (permalink)
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Default Re: Absolutely devastated

Untrue about twitching. And the ancestry reporting of that has been reported to be so inaccurate there was discussion about editing a 3rd party reference but was not done as that would take the reference from people who had other testing.

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Old 11-17-2018, 12:40 PM #10 (permalink)
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Default Re: Absolutely devastated

Ha ha I love the ę* sounds like you’re recovering from birth ę* ha that’s a really good one !
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Old 11-17-2018, 01:02 PM #11 (permalink)
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Default Re: Absolutely devastated

Carpal tunnel syndrome is a reasonable possibility. It is common in pregnancy and postpartum. Numbness, tingling, and sometimes pain are the main symptoms of CTS, but it can also cause hand weakness and atrophy of the thumb (thenar) muscles. And itís far more common than ALS, by orders of magnitude.
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Old 11-17-2018, 01:15 PM #12 (permalink)
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Default Re: Absolutely devastated

So you are admitting that you see atrophy in the pictures that I posted? When I was pregnant I did wake up with numb hands a lot.
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Old 11-17-2018, 01:23 PM #13 (permalink)
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Default Re: Absolutely devastated

No I’m not admitting I see atrophy in the pictures. I’m saying atrophy can result from carpal tunnel syndrome.

Only a physician examining you can tell you whether or not you have atrophy.

Pictures generally don’t tell us much, but what I do see in your pictures are what appears to be big beefy thenar muscles, which is normal.
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Old 11-17-2018, 01:57 PM #14 (permalink)
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Default Re: Absolutely devastated

I want to believe you so bad but my dr specifically said it looked like muscle loss. I'm scared beyond words to get testing because if it comes back that it's not carpal tunnel then it's probably als. And I've been twitching for months which makes me think I have it even more. My hand just does not look "beefy" to me. I just don't get it because my hands feel normal to me, I have the same strength I've always had. The only reason I noticed the dents is because I was reading about als online and specifically looked at my hands.
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Old 11-17-2018, 02:44 PM #15 (permalink)
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Default Re: Absolutely devastated

The folks here aren't the ones you need to convince of anything. This forum exists to support those with ALS and caregivers. This post READ BEFORE POSTING! Answers to common concerns about possible symptoms! outlines a variety of things with regards to symptoms, differentials and what to expect from this forum- and what to do when your questions have been answered.

Your discussion thread has already covered it all pretty comprehensively now. If you are convinced you have all the hallmarks of ALS (note: the people here don't think you do), your next step is to visit with a neurologist. Further conversation here will not net you any more information or reassurance and would only serve to increase your anxiety about ALS as you try to convince folk you have the signs while people here tell you they don't see it. The only way you're really going to know is to have an actual in-person exam with a neuro. Please let us know how it goes.
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