My husband died from ALS and now I’m afraid I have it

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IASAD

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Hi. I was on here in 2016/2017 asking for advice about my husband’s symptoms. It turns out he did have ALS. He passed away June 2018. He was 47. I know WAY more about this disease than I ever wanted to. I’m so sorry for everything you’re all dealing with. I completely understand.

But now, I’m having issues. I know that the chances of me having it are slim and I know I’m also just really hypersensitive about it. So I’m hoping that’s why I’m so worried and it’s just nothing.

I’m 52 years old.

About 8 months ago I noticed that my right arm was getting weaker. I couldn’t lift as much in the gym. When I tried to do certain moves I had shoulder or wrist pain. Fast forward until now. I can’t clean my house or mow my lawn or do a plank or lift anything remotely heavy with that arm. i get pain in my shoulder and i keep pulling muscles. The other day I pulled a forearm muscle just from lifting my coffee cup. There’s a noticeable difference in the way that arm looks compared to the other arm. Well, I can notice it. It’s different than it used to be. my right bicep is smaller than my left, and I’m right handed. I see divets that weren’t there before.

I saw a neurologist a couple months ago. Main reason for going at that time was hand weakness and involuntary jerking in my hands and sometimes other parts of my body (not fasciculations but actual jerks, which have since gone away). He didn’t think this was a cause for concern but instead said I should probably see an orthopedist. He did say that he could do an EMG test if I wanted to. He said it was optional. So I decided not to do it. However I just made an appointment for September because my condition has
I think I would feel better having it done.

I guess I just want you to tell me I just have PTSD and am just hyper aware. I’ve never had any fasciculations. But I’m scared. I know you’ll say that perceived weakness is different from real weakness. However, my late husband had perceived weakness for months before his hands stopped working right. That’s why I’m so scared.

Any thoughts would be appreciated. Thanks.
 

lgelb

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I'm very sorry about your husband.

I'm happy to tell you that you are hyperaware, and ALS doesn't manifest in varied arm muscles all at the same time as you describe, but I also agree that you should see an orthopedist as you could have frozen shoulder or something like that, maybe an overuse injury. These can manifest in twitching elsewhere, and the feeling that you have "pulled" muscles that could be compensating for another site.

Best,
Laurie
 

Nikki J

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Of course you have PTSD. How could you not? you also clearly have a physical problem with your arm. I am glad you are looking into it. the odds are of course in your favor that is not ALS and will be fixable / treatable. The emg will give you direction. Do remember that it could be abnormal for reasons other than ALS in your case it might show a neck issue.
making an ortho appointment sounds reasonable. You can always cancel if the emg points elsewhere

it does sound like things spread from your hand?? And you have had progressive loss of function? Those can still be from lots of things

so called marital ALS is very rare there are a few papers on it in the literature. The theory is that two people who have a mild genetic susceptibility ( which is what a lot of people feel underlies SALS) live a common existence and get exposed to the same triggers ( whatever they may be). I think your husband was a vet? If you are not you missed that risk factor.

let us know what happens. Best of luck
 

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I am so very sorry for the loss of your husband, and your fears about also contracting ALS. My wife experienced the same fears as I was being diagnosed last year (she experienced some leg fasciculations and a slight perceived weakness in her left leg), so I understand what you are going through.

Let me echo what Nikki said regarding the extreme rarity of documented conjugal ALS cases. The literature identifies around 9-10 cases that span more than 40 years, several of which occurred in France. In almost all of those cases, the occurrence among spouses was separated by a number of years, so the statistical likelihood that two non-related partners would contract the disease at about the same time Is almost beyond calculation. I could find only one case in which the diagnosis was separated by 18 months or so.

To ease my wife’s fear, she had an EMG performed which came back perfectly normal, as did her clinical evaluation, though the neurologist did say she might have a mild case of polyneuropathy in that leg. After that, her fears and symptoms abated.

I have no doubt that further investigation with an orthopedic specialist will help pinpoint the issue with your arm. I hope this helps ease your anxiety. Best, Kevin
 

KimT

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I would get the EMG and nerve conduction study because they can point to other things that are treatable. For example, my torn rotator cuff and herniated cervical c5/c6 from years ago caused issues similar to what you're dealing with. Just because it isn't ALS, doesn't mean it isn't something else and that something else probably can be treated.
 

IASAD

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Does a herniated disc show up on the EMG?
 

Nikki J

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a disc issue can often cause denervation that will be seen on emg yes. They would follow up with an mri if so
 

IASAD

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Well...I’m now terrified. Yesterday I started getting fasciculations. Started in my calf on my weak side. I looked, and that calf is considerably smaller than my other one. Now I’m getting twitches in that weakened arm as well, and my weak shoulder. Please tell me that it’s possible my brain is so convinced I have ALS that it’s manifesting these twitches. Because now I’m certain I have it. I have the exact same symptoms my husband had.

I have to wait until Sept 21 for my EMG. I can’t function...this is absolutely all I can think about. I’m scared to death here.
 

Nikki J

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Twitches can certainly be caused or exacerbated by stress As for the rest of your symptoms I know waiting is hard but 9/21 is less than 2 weeks away. Try to keep busy as best you can. Waiting is hard I know
 

lgelb

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Yes, your mind can produce everything you mentioned, and we are all asymmetrical.
 

IASAD

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It’s all mainly on my right side though. From shoulder down to leg
 

lgelb

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ALS doesn't manifest in all muscles on one side at once.
 

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and twitching means nothing - please see your doctor for practical help in dealing with the couple of weeks you have to wait
 

KevinM

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Hi. I posted above about my spouses very similar response after the stress of my diagnosis, so I know how anxious this makes you. She told me over the course of two months that she had arm weakness, fasciculations, and even texted me in a panic one day saying she thought she had drop foot.

I tried to joke with her until her neuro appointment and EMG and Nerve Conduction Study by telling her that if it were true that a husband and wife both contracted this rare disease within a few months of each other, we would be famous in the world of neurology and written up by every medical journal in the world!

it bears saying again that there is only one other recorded case I could find IN THE WORLD where conjugal ALS occurred within 2 years or less of each other. I went on to explain that even if we were exposed to the same theoretical environmental toxin, the probability that both us would metabolize it the same way, at the same time, and that this toxin would serve as the same ALS trigger for both of us is beyond calculation.

Try not to think like Lloyd in ”Dumb and Dumber,” when he asked the girl what the odds were of her going out with him, she said “one in a million‘“ and Lloyd replied “So you're saying I’ve got a chance!” Answers will come, but ALS won’t be on the table. Best wishes, Kevin
 

IASAD

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Thank you Kevin. It helps to think of how crazy the odds are. I just really don’t want to be that person written about in the medical journals.
 
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