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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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 · 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:
TheShellBeach · 03/06/2024 16:25

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

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:
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

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 😉)

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.

Bestyearever2024 · 19/06/2024 19:27

How are you both @Worryworry84 ?

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 · 22/06/2024 22:28

Thinking of you @Worryworry84 Flowers

Comingupriver · 22/06/2024 22:32

Thinking of you all, OP.

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.

TotHappy · 22/06/2024 22:59

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

Wonkywinky · 22/06/2024 23:07

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

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

Countrygirlxo · 22/06/2024 23:37

Hope you get answers soon💐

Evilspiritgin · 22/06/2024 23:47

Wishing you both the best, hopefully you get news soon

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:
Februarycat · 14/07/2024 13:24

Sounds a bit like Guillan Barre Syndrome, some of the symptoms are similar. Might be worth mentioning to doctors. They do a lumbar puncture to diagnose it.

FelicityBennett · 14/07/2024 13:36

there is a chronic form of Guillan Barre syndrome called CIDP which shows as progressive demyelination of peripheral nerves which is what it could be but there are lots of causes of demyelination from deficiency to toxins . Did he have a brain/spine MRI ?
I hate it when patients are sent copies of results with no explanation , Google is not always a friend . When is his follow up ?

LakieLady · 14/07/2024 14:26

TheShellBeach · 13/06/2024 12:11

You don't need a diagnosis to get PIP.

This is very true. I have claimed PIP for clients who haven't got a diagnosis but are undergoing tests etc.

If you put something like "?neuropathy, undergoing tests" for the answer to question 2 and put the date he first started getting symptoms, and include the test reports with the form, that should be sufficient.

I'm so sorry that your DH is going through this, and it must be incredibly worrying for both of you. Getting PIP can take a long time, and it's worth starting the process now in case he has to reduce his hours or something. I'd ring to get the form tomorrow (0800 917 2222) and it may be worth seeing if you can get an appointment with CAB or similar to help with completing it.

I really hope that it turns out to be nothing awful and that he gets a diagnosis soon.

Bestyearever2024 · 13/08/2024 19:02

How are things, @Worryworry84

Thinking of you 🥰

Lixon · 14/08/2024 12:53

Which hospital are you being seen under and could you ask for a referral anywhere else for a second opinion (or even first diagnosis if that is still lacking). My dad has MND and the team at Kings are fantastic if you are based anywhere near London and want to be able to rule that or similar diseases out.

Fannyfiggs · 14/08/2024 13:04

My goodness what a worrying year for you OP.

I always think it's easier for the person who has the illness/condition than their loved ones.

I hope you get some answers soon and that you're looking after yourself as well as your DH ❤️

Worryworry84 · 14/08/2024 18:01

Hi all thank you for your concerns.
Still waiting more answers - DH was asked to get in touch if he wants to do genetic testing so hoping that will give more answers.
however whenever he phones they are busy so still waiting for a call back but he will try again tomorrow.
we are in Scotland so nowhere near London I’m afraid!
i will hopefully have more update soon!
thank you all x

OP posts:
Bestyearever2024 · 04/09/2024 07:55

How are things @Worryworry84 ?

Thinking of you Flowers

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