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Author Topic: How to help my hubby with his ALS fear?  (Read 884 times)

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Offline jessica0113

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How to help my hubby with his ALS fear?
« on: February 10, 2014, 11:00:22 PM »
My sweetie of 10 years is going through a nervous breakdown.  He believes he has ALS and is about to die.  It started with twitches in December.  He started Googling and went into full panic mode, and hasn't left since.  He's seen a regular doctor and a neurologist, and even had an EMG which confirmed he was OK.  His twitching has only gotten worse though, and he is terrified that this is early ALS.

I'm beside myself knowing what to do.  I'm worried he's about to go to a mental hospital- he says he thinks about ALS from the morning he wakes up until when he goes to bed, and has read every academic publication he could find on the subject.  He does strength testing daily of every muscle possible, and is really falling apart.  He is always on his phone or computer, reading everything he can find on the subject.  It's an obsession he can't stop.

He's made an appointment to see our GP, but a referral to a psychiatrist could take a while.  I've told him over and over that I'm confident he's not ill, but the stress is going to hurt him and his career.  His coworkers are starting to notice that he is off.  He's previously interpreted my disbelief that he has ALS as an indication that I don't really love him, and he has said over and over that he feels like he's going through this alone.

How do I help him?  At this point, my best bet is to force feed him vodka as soon as he gets home in the afternoon, to help him calm down.

Please help.  My heart is breaking for him and I don't know what to do. 
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Offline Gomubukai

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Re: How to help my hubby with his ALS fear?
« Reply #1 on: February 11, 2014, 02:54:52 AM »
Hey. I'm so sorry you guys are going trough this. Health anxiety is a horrible disorder and it specific fears can be very hard to understand for people who have never experienced it

A lot of us health anxious folk tend to choose neurological disorders such as ms or ALS because a lot of the symptoms are shared with the burned out nervous system of an anxious person. Those disease are also impossible to cure and are quite difficult to diagnose making them a staple on this website.

If you can, try to stop him from googling. Google is ABSOLUTELY the worst thing someone with health anxiety can do. We go on there hoping for reassurance, but the way the algorithms work means we get the exact opposite reaction. It also makes things seem much more likely than they are. I did a quick calculation for another lady with ALS as her main fear a couple of days ago and I think the odds of getting it are like 0.002% there could even have been an extra 0 in there that I've missed. Really though, it's incredibly rare.

Let me start by saying my friends mum has a slow moving version of ALS and twitching is absolutely not one of the first signs. 

ALS is degenerative, so if he lost the ability to pick up a tea cup or turn a door handle. That's it. The ability to do that is gone. It doesn't come and go. Or gradually get better and then worse again.

It's also quite fast. The prognosis usually being 2-4 years from diagnosis. So if he has had the fear for a couple if months but isn't any worse etc he is fine.

I'm really sorry. I have to go to a quick appointment and I will finish answering this later. But I just wanted to give you something to start with.

Good luck! Ill be back soon :)
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Offline MOchp

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Re: How to help my hubby with his ALS fear?
« Reply #2 on: February 11, 2014, 05:37:25 AM »
I think is really awesome of you to come here to try and help your husband, I can tell you really care about him. There are a couple sticky posts at the top of this forum about ALS fears that may help to read. Have yall looked into therapy at all? A lot of the times that is a good place to start. You say you think it my take a while to get to a psychiatrist but if you talk to his GP about him being in a bad place with anxiety the doc may be able to prescribe something to help him. I get my meds through my GP.
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Offline Hypo84

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Re: How to help my hubby with his ALS fear?
« Reply #3 on: February 11, 2014, 06:15:14 AM »
He should start seeing therapist, and start with some medication probably. If you can stop him from Googling. It's almost impossible to cure HA with constant Googling.
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Offline Gomubukai

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Re: How to help my hubby with his ALS fear?
« Reply #4 on: February 11, 2014, 06:42:49 AM »
Hey

I came back to finish my post. But after rereading it there really isn't that much more I can add at the moment 

What symptoms does your husband have that make him think he has ALS? There's a sticky note at the top of the board which much come in helpful. It's a list of some of the most common symptoms suffers of health anxiety tend to experience http://www.anxietyzone.com/index.php/topic,73134.0.html

It isn't exhaustive as lots of us have experienced things that aren't on there that are definitely anxiety related but it might be a good list to print off and show your husband.

Or, if he's willing - maybe point him directly  to this board so he can see just how intertwined anxiety and ALS fears are for himself? :)
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Offline Sunlover

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Re: How to help my hubby with his ALS fear?
« Reply #5 on: February 11, 2014, 09:21:17 AM »
Gomubukai has a great idea!   Let him read posts here, let him do searches for ALS (HERE, not GOOGLE!) and he will see for himself how many people think they have that (along with MS) due to both being a central nervous system thing like anxiety.
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Offline Hypo84

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Re: How to help my hubby with his ALS fear?
« Reply #6 on: February 11, 2014, 09:30:50 AM »
Tell your husband I will give him 100$ if he comes here and manages to convince any of us that he has ALS with clean EMG.  :action-smiley-065:
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #7 on: February 11, 2014, 08:52:58 PM »
Thank you everyone for your kind words and advice! 

He got in to see the GP today.  She prescribed him Ativan for 2 weeks and Celexa long-term. 

He thinks he has ALS because of the fasciculations, and now claims he is having trouble swallowing.  He said food gets stuck- but he's not choking or coughing at all.  The Doctor also gave him a referral to an ENT and told him she doesn't think his swallowing issues are ALS, and re-read the neurologist's notes that he has NO SIGNS of a motor neuron disease.  Despite this, he still thinks it is too early to catch.  He said that the referral to ENT won't help because the ENT won't know about ALS and wouldn't be able to find anything wrong with him.  He wants to go back to the neuro to get another EMG.  I asked him what if that one came up clear too...  would he then believe he is OK?  He said he doesn't know.

I've talked with him about not Googling, but that seems to be only part of it.  He stayed up much of last night doing swallowing tests with Cheerios.  I just caught him reading a paper out loud and recording it, to check his speaking rate and whether his sleep is slurred.  I'm going to stay on him about this behavior.  I feel that the medicine alone won't help him if he doesn't change this behavior.  He isn't the counseling kind of guy- I've tried to get him to go before over the years for marriage counseling, and he has refused.  I feel he is avoiding a psych visit for this reason, as well as his belief that his behavior is rational and his risk of ALS is significant. 

Please keep the advice coming!   Thank you so much, everyone. 

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Offline MOchp

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Re: How to help my hubby with his ALS fear?
« Reply #8 on: February 11, 2014, 09:45:50 PM »
In my experience the meds help the behavior by putting the mind at ease and helping to not be so obsessed with the worries and thoughts. I find it easy to let stuff roll of my shoulders and be more passive when I am on my meds. Something I would obsess about off my meds barely bothers me when I am on them. I really hope that the meds help him to calm down and not be so obsessed. Do not get discouraged if the long term meds either take a little bit to start working or don't work like you hope, as sometimes you have to try different ones until you find the right one. I have been on a few different ones until the ones I am on now that have worked for years now for me.
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Offline soaringfalcon

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Re: How to help my hubby with his ALS fear?
« Reply #9 on: February 11, 2014, 10:30:14 PM »
First of all, kudos to you!!!  I couldn't do this without my husband.  I know it's not easy to live with an HA sufferer and that it's very trying.

I take Celexa and Xanax and it's a huge help!  It STOPS the obsessive thoughts.  Once he can stop those obsessive thoughts, he'll learn new thinking patterns and be back to his baseline.  The fears AND his symptoms will gradually fade away. 

Celexa can have some weird side effects as the body adjusts, especially since he's consumed with anxiety.  Don't tell him this but be prepared if he notices weird things.  It can make you feel shaky, give you brain "zaps", and other minor neurological symptoms.  These go away as the body adjusts.

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Offline Sunlover

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Re: How to help my hubby with his ALS fear?
« Reply #10 on: February 12, 2014, 05:35:20 AM »
Sounds like really bad health OCD and I'm glad he is getting some medication.  There's no way to just stop what he is doing (the swallowing tests, etc) on his own.  What happens is his anxiety builds to a level that he just HAS to test.  Then he'll do a cheerio test and it will relax him for about 10 minutes, then he'll start thinking,"Maybe I didn't do it right that time"  maybe this, maybe that... anxiety builds to an uncomfortable level again and he has to do it again to take that anxiety away, and it goes on and on.  I know, I've been there (not with ALS or swallowing, but the checking and checking and checking until I thought I was going to go out of my mind)  You have no idea how bad I feel for your husband, I am almost in tears because he is locked in a living he// You are one special wife to help him so much and not get frustrated and angry with him.
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Offline Hypo84

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Re: How to help my hubby with his ALS fear?
« Reply #11 on: February 12, 2014, 07:45:30 AM »
I agree with others, it's great that he started taking medications.

With anti-depressants it can take even 1 month before you see any benefits and in some people there are side effects during that period but encourage him to keep taking them.

If you have money, therapy will certainly help him.

Finally, it's great to see how supportive you are. He is a lucky guy to have you.
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Offline HeatherJoy11

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Re: How to help my hubby with his ALS fear?
« Reply #12 on: February 12, 2014, 01:39:19 PM »
I went through this exact same fear a couple years ago...I was twitching all over - from head to toe every day. I would get this crazy headaches and weird head pains. My limbs would feel heavy and numb. I felt like I was tripping over my own feet. I was so scared that I had ALS that it consumed me for a while. I had multiple neurological exams. I even went to a neurologist and I also had a head CT scan and an EMG. NOTHING WAS WRONG. When I tell you I had all of the symptoms of ALS , I did....because I Googled my way into believing that I did.

The neurologist told me over and over it was anxiety. And he told me this (which you can share with your husband): "I can tell just watching someone walk from the waiting room to the exam room that something is neurologically wrong. I watch every movement you make before you even step in here. And as I examine you, it confirms my initial diagnosis: you have anxiety."

I had benign fasciculations. When you are so anxious that your body starts responding to the stress in this way, you freak out. But you don't realize that you're doing it to yourself. YOu start having actual physical  symptoms of anxiety. I remember one day watching my thumb twitch and then my palm and my thigh, and the arm. And then MY TONGUE DID. I completely freaked out.

But the neuro was right -- I don't have ALS.
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #13 on: February 12, 2014, 06:49:58 PM »
He said today that he is still thinking of ALS, but the medicine makes him care less while he is thinking.  Hopefully this is a step in the right direction!  One of his coworkers said he looked "out of it" today, which I guess is expected.  However, since his coworkers mentioned that also recently, before he started taking medicine, I feel this isn't exactly a drawback.

Good luck to everyone with your HA.  I can't imagine how hard it must be to be tormented by that.  It's really taken a toll on my husband-  hopefully he can redirect his thoughts elsewhere and have some peace.  It's really enlightening reading this board, to see what he is going through.  Thank you for sharing your stories.
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Offline soaringfalcon

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Re: How to help my hubby with his ALS fear?
« Reply #14 on: February 12, 2014, 08:53:13 PM »
That is definitely a step in the right direction.  Once you don't have anxiety over the thinking, it slowly goes away. 

Looking out of it is normal when starting an SSRI.

Again, bless you for helping him.
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