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New member
Jan 10, 2019
Hi all, thank you for allowing me to join and be able to post here. I've been on this website a lot since October 2017 and I'll explain why.

My husband, who is 31 years old began getting some twitching in his muscles in or around October 2017. He went to his GP for around two visits before the Dr blurted out it might be MND. Since that day my husband has convinced himself this is what he has. Dr referred him to a neurologist and the waiting list was about 5 months. We decided to pay for a private neurologist as I wasn't prepared to have my husband worry for that long.

Long story short, saw a neurologist, he did all the strength tests, didn't do an EMG as he saw no reason to, no problems, not MND but mentioned BFS. We were satisfied and carried on with our lives. No complaints from husband about twitches until October 2018. He went to his GP, told to take all the usual vitamins etc. Had a blood test which showed borderline underactive thyroid, borderline bone profile and CK was slightly elevated. Dr ordered further blood test a week later to check CK level again and this came back as "no action required"

The twitches my husband gets are mainly in his thigh, just above his knee and he says he can feel it pulsating and has complained of being able to feel blood rush through his leg. He also complains of ankle discomfort. He gets twitches in other limbs, he was up at 5am this morning with a big twitch in his bicep which lasted for around 10 minutes. He of course went into panic mode and thinks he has this dreadful disease. He jolts a lot in the night but he's always been a bit fidgety. He has a very manual job which involves lifting heavy metal for the most part of the day. He still does this with no problems, no weakness, nothing.

I've tried to reassure him that twitching alone isn't a deadly disease but I'm having a hard time. He has never suffered with anxiety but over the last 2 months I've seen him have two bad anxiety attacks when he's been twitching. He's also started looking for things to coincide with the twitchs. He got out of the bath one time white as a ghost and said he had a dent in his thigh muscle, naturally he gets on google and he thinks his muscles are wasting in his leg. I told him to get off google.

His irattionality is putting a lot of stress on our marriage. I tell him all the time that he is fine and a neurologist has discounted MND but he has convinced himself otherwise. I have read the sticky which subdues any worry that I have. However, if anybody reading this can relate to what my husband experiences then I would be grateful if you reply.

Apologies for the long post but I wanted to make sure I got everything in. Thanks for reading 😊
Hi, K, your husband sounds fairly similar to many who post in this section. MND is a terrifying prospect and some people find it hard to get out of their heads once it's in.

You could tell him that no one here will see ALS in a year of twitches, but I doubt he will find that reassuring.

Apart from discussing frankly whether this fear/obsession/anxiety relates to something else altogether (e.g. is he unhappy in some other aspect of life, still traumatized from something in the past, perhaps someone else's illness or injury, etc.), I would encourage him to see a trusted person already in his life, or a counselor. Sometimes a third party can be helpful in laying fears to rest or helping him learn to cope when they arise.

I am not implying you need to medicalize this, as it were, as much as face it head on as you would any other problem, and keep asking the question, "How do we make this better?" until it is answered.

It is OK to make clear the threat that his concerns pose to your marriage, in tandem with a plan to allay them. You do not want to increase his anxiety, but you want to be clear that you will not enable it.

Can you enlist his GP in this effort? S/he may be persuasive and/or know of resources for him.

We do not allow people who do not have or care for someone with ALS to post outside their own threads, so you will not get responses from the worried well. But if you look through this subforum, you will find some stories where the unfounded worriers have found insight, and thus you can inform your husband that his is not an uncommon fear, and that others have come through it. He can, too.

Thank you for your reply Laurie.

He's always been a worrier but this has taken it to a whole other level. He isn't very good at expressing his emotions and bottles a lot of things up. I have taken steps to refer him to counselling in the hope it will help him, he's never been keen on the idea but I think he realises now that maybe he does need to speak to someone other than me to alleviate his worries.

He's been referred for another neurologist appointment in three weeks time so he hasn't got long to wait to get some answers.

Thanks again, Katy :)
Imagine ANY doctor just randomly throwing out MND and scaring the ba-jeepers out of someone. I hope you found a new Gp!
Yes, I was assuming there is a new GP now...there would be no point to the old one trying to retract such a provocative statement.

Katy, I hope the 2nd neuro is a good communicator and your husband gains some peace of mind, perhaps with counseling as well.
Yes he's seen a few other doctors since, all of which have told him that he's nothing to worry about. He's even been to the our local a&e when he freaked out about his twitching and two doctors there also told him he displays no symptoms that marry to his worries.

I just know I wouldn't be on this page if that doctor hadn't have said anything. There's one thing thinking it and another saying. Thank you both for taking the time to reply :)
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