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AIBU?

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To be worried about DH symptom

117 replies

Worryworry84 · 30/09/2023 11:53

Hi all,
i am panicked about DH toe.
its recently just got floppy, like it just hangs, like it’s dead. He can’t lift it. It’s so weak. It’s not sore but he still has sensation has just lost control of it. He’s been tripping up because of it.
I’m worried it’s an early symptom of motor neurone disease. I know someone who had that condition it and it and it started when they noticed a weak digit then for worse from there on.
what else could it be? Could it be something not worrying?

in so worried.
thanks x

OP posts:
Worryworry84 · 14/07/2024 12:55

Hi all

Thank you all for your thoughts and patience

DH got sent a letter with the results of the nerve conduction study and I am not actually any clearer in what is going on.
It’s says the tests demonstrated features of neuropathy - nerve damage - in arms and legs, showing signs of demyelination as well as some axonal nerve damage. ?!?!
What does it all mean!!!
So still no name of an actual condition or what has caused it. They want to do some genetic testing next.
I think DH is an anomaly.
I just want to know if it will keep getting worse or affect his life too much 😭 but basically we still don’t know so still in limbo I guess xxx

OP posts:
Evilspiritgin · 22/06/2024 23:47

Wishing you both the best, hopefully you get news soon

Countrygirlxo · 22/06/2024 23:37

Hope you get answers soon💐

Wishthiswasntmypost · 22/06/2024 23:08

This history reminds me a lot of a friend's son who had very similar symptoms. His progressed rapidly (space of days) and I think everyone feared the worse. He did however recover slowly and is living a normal life now. I can't remember the name of his condition but it was rare and was something like an acute demyelination of peripheral nerves (it was a long time ago so I'm very much paraphrasing)

I wish you well. Waiting really is the hardest

Wonkywinky · 22/06/2024 23:07

Hope you hear soon and it's something with an easy fix

TotHappy · 22/06/2024 22:59

I'm so sorry for all the long waits, OP - very scary.

Superstoria · 22/06/2024 22:45

Bless you, that’s a long time to be worrying and waiting. Really hope you get some definitive answers soon.

Comingupriver · 22/06/2024 22:32

Thinking of you all, OP.

Bestyearever2024 · 22/06/2024 22:28

Thinking of you @Worryworry84 Flowers

Worryworry84 · 22/06/2024 18:45

Hello all.

thank you for your messages.

DH had a nerve conduction study the other day so only a few weeks to wait for results now.

while I am worried I am also relived we will have answers soon.
he said the dr doing the study said she wasn’t sure but it seemed there might be damaged to the outer layer of the nerve tissue and it might be something really rare. But she doesn’t know for certain. So that’s where we are at.
we have a busy few weeks ahead so hopefully this can keep our mind off things.

I’m there for DH although he is still seemingly relaxed about it all and says he is not worried.
but there’s really not much I can do except keep busy and just be a loving spouse and support him anyway I can x

OP posts:
Bestyearever2024 · 19/06/2024 19:27

How are you both @Worryworry84 ?

TheShellBeach · 13/06/2024 12:11

Scrubnib · 13/06/2024 11:59

PS - don’t worry about claiming PIP, or life insurance, or anything like that at this stage. You will need a diagnosis before going down that path, and plenty of people will swoop to support you through it (if it turns out to be MND, which it won’t 😉)

You don't need a diagnosis to get PIP.

Scrubnib · 13/06/2024 11:59

PS - don’t worry about claiming PIP, or life insurance, or anything like that at this stage. You will need a diagnosis before going down that path, and plenty of people will swoop to support you through it (if it turns out to be MND, which it won’t 😉)

Scrubnib · 13/06/2024 11:58

Hi @Worryworry84 - I was diagnosed with MND last year and came across your post.

I’m glad your DH has a Nerve Conduction Test booked, but do you know if they’re doing an EMG at the same time? That is the gold standard test for MND (as much as there is one), and can also help diagnose other conditions.

If they haven’t booked an EMG, I’d ask them if they can do it at the same visit. They often are done concurrently (They were for me).

There many (much more likely) things that could cause your husband’s symptoms. Everyone jumps to MND because (a) it’s frightening and (b) all the other mimicking conditions are much less well known, and have neurological names which are difficult to pronounce 😄

I was only 40 years old when diagnosed, with a young family, so I know what you’re going through. Try not to worry too much, as you’re doing all the right things and everything else is outside your control.

MND is a tough diagnosis to get, but there is still life and joy to be had after getting such bad news. All you see in the media is people at the end of their MND journey, but the truth is there’s plenty of good times to celebrate before that, when your function is still good. Everyone at my support group is still talking, eating, and pretty up beat about it all.

Wishing you all the best - don’t hesitate to contact me if you need any more advice.

Simon

Worryworry84 · 03/06/2024 19:35

TheShellBeach · 03/06/2024 16:25

Has he claimed PIP yet?
You can get it even if you're working.

No he hasn’t and he probably won’t…
its a coincidence that his role at work changed - he hasn’t told anybody at work all of the issues, maybe some… but I feel he’s downplaying it all whereas he feels I over worry.. x

OP posts:
TheShellBeach · 03/06/2024 16:25

Has he claimed PIP yet?
You can get it even if you're working.

Worryworry84 · 03/06/2024 08:16

SevenKingsMustDie · 01/06/2024 09:04

Hi, OP - just wondering how your DH is going?

Have been thinking about you and your thread ❤️

Thanks,

I notice him shaking more these days…
but his role at work has changed so it’s not physical right now and it’s office based.
I feel like he keeps forgetting things I have told him, whereas he was always so observant before.
for a while I was thinking he was just not interested in what I was saying but he seems to forget when he’s already told me things too?
but he has a nerve conduction study later this month so not long to wait for answers. X

OP posts:
SevenKingsMustDie · 01/06/2024 09:04

Hi, OP - just wondering how your DH is going?

Have been thinking about you and your thread ❤️

merrymelodies · 11/05/2024 19:09

I hope everything goes as smoothly as possible for your DH and for you. DaffodilDaffodilDaffodil

App13 · 11/05/2024 18:55

Famfirst · 11/05/2024 18:47

He's been going to the doctor and hospital for many months as discussed in the thread.

And to be fair, a gp can't do anything but refer

Famfirst · 11/05/2024 18:47

Skybluepinky · 11/05/2024 18:27

He needs to visit gp as soon as possible.

He's been going to the doctor and hospital for many months as discussed in the thread.

Famfirst · 11/05/2024 18:47

When it comes to going for the tests he'll probably be glad to have you there. It may be that the pre test blurb will advise him to have someone there even if it's only to drive home.

Good luck with it, I've got everything crossed for you both.

Skybluepinky · 11/05/2024 18:27

He needs to visit gp as soon as possible.

App13 · 11/05/2024 18:26

Worryworry84 · 11/05/2024 08:03

DH always tries to play it down like he doesn’t need me at appointments etc but I definitely want to be there for him if he’ll let me. He’s just the kind of guy that likes to process on his own then talk to me.

how do I have him let me go along ?
or am I better to leave him to it?
I really want to go with him but I want to what’s best for him xxx

Wait outside, as he may not be fit enough to drive after as it is painful

My thoughts are with you

Rtc12 · 11/05/2024 08:15

Sending hugs, it's good he's booked in for the study soon