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Original poster

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:
New posts on this thread. Refresh page
EveryOtherNameTaken · 15/04/2025 16:45

Strangely, this post popped into my head last night!

Hope you're OK.

Andintotheseawego · 15/04/2025 16:40

Hello Op, any updates? Hope you're ok 💐

ThatBreezyCrab · 02/04/2025 08:59

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Original poster
Worryworry84 · 25/10/2024 16:08

Andintotheseawego · 23/10/2024 22:40

It must be incredibly hard OP, especially if your husband isn't engaging with seeking referrals
and answers. My husband was incredibly poorly this time last year, we ended up paying private as the local hospital and GP's were absolutely useless. My husband had to chase constantly, speak to different doctor's secretaries, find phone numbers for different departments and chase them, he even made spreadsheets and graphs of his test results and symptoms, all whilst feeling incredibly poorly. The whole system is so broken. I kept thinking through it all, how do other people manage and navigate the nhs? It seems if you aren't constantly chasing then you get forgotten. When he was finally seen and given the right tests he was admitted into hospital for 3 weeks and is now on lifelong medication and monthly check ups. I really feel for you OP, please know you have a lot of support on here. Sending much strength x

Thank you. I’m glad your husband finally got seen too.
it’s annoying how long some things take while other things are quicker. This has really affected my mental health and my doctors have been great with that.
I just wish it didn’t affect my mental health so much. It’s the nothing that’s the hardest I think xxx

OP posts:
Original poster
Worryworry84 · 25/10/2024 16:06

Bestyearever2024 · 21/10/2024 19:50

Oh bless you @Worryworry84

Sending you loads of love ❤️

Thank you x

OP posts:
Andintotheseawego · 23/10/2024 22:40

It must be incredibly hard OP, especially if your husband isn't engaging with seeking referrals
and answers. My husband was incredibly poorly this time last year, we ended up paying private as the local hospital and GP's were absolutely useless. My husband had to chase constantly, speak to different doctor's secretaries, find phone numbers for different departments and chase them, he even made spreadsheets and graphs of his test results and symptoms, all whilst feeling incredibly poorly. The whole system is so broken. I kept thinking through it all, how do other people manage and navigate the nhs? It seems if you aren't constantly chasing then you get forgotten. When he was finally seen and given the right tests he was admitted into hospital for 3 weeks and is now on lifelong medication and monthly check ups. I really feel for you OP, please know you have a lot of support on here. Sending much strength x

Bestyearever2024 · 21/10/2024 19:50

Oh bless you @Worryworry84

Sending you loads of love ❤️

Original poster
Worryworry84 · 21/10/2024 08:17

H everyone.

sorry for the last reply. My mental health hasn’t been great.

no further updates on DH. He is supposed to came back to arrange genetic testing but they keep being busy?!
part of my thinks if they are not so urgent on chasing that part up maybe they are not worried? That’s what I am telling myself as it’s frustrating not knowing for so long.

I’ll speak to DH and ask him to push the referrals and get more specific testing but it’s also frustrating that he just doesn’t seem bothered and I’m running out of headspace 😭
thanks for all your concerns. Appreciate it. x

OP posts:
Firenzeflower · 07/10/2024 06:56

OP hasn't posted since August. I don't think she's coming back. Hopefully because things are ok.

DrunkTinkerbell40s · 07/10/2024 06:50

Can you try and ask the doctor to do a methylmalonic blood test? That would be a true b12 deficiency test as testing b12 isn't always accurate. I've heard of so many instances where people have gradually got more and more poorly and then b12 treatment has finally been given and their systems have been reversed. So I really think b12 needs to be looked into more than just a simple b12 test x

Bestyearever2024 · 07/10/2024 06:48

Firenzeflower · 07/10/2024 06:44

Hopefully he's fine which is why she hasn't come back. X

Absolutely. That's what I'm hoping ❤️

DrunkTinkerbell40s · 07/10/2024 06:47

Hello, sorry, I've only just come across your thread.
Can you please post your husband's b12 and folic acid results, with the ranges they give?
If his folic acid is low, it can make his b12 artificially high. And sometimes they say b12 is normal, but it could actually be low.
I wonder if it would be worth giving him some b12 injections just in case to see if there's any improvement. You cannot have too much b12 and a deficiency does cause nerve damage so it might be worth a try x

Firenzeflower · 07/10/2024 06:44

Hopefully he's fine which is why she hasn't come back. X

Bestyearever2024 · 07/10/2024 06:35

How's things @Worryworry84

Thinking of you ❤️

Ijustwanttochill · 07/09/2024 00:49

Hi OP, I was just scrolling on old posts and read this one. Is there any update on your DH? I hope you are all doing well, sending you a big hug x

Normallynumb · 07/09/2024 00:38

I've just reacquainted myself with your thread as a friend has had some of the same symptoms as your DH
He has just been diagnosed with Charcot- Marie tooth disease

Andintotheseawego · 06/09/2024 23:00

Yes thinking of you OP 💐

Bestyearever2024 · 04/09/2024 07:55

How are things @Worryworry84 ?

Thinking of you Flowers

Original poster
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:
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 ❤️

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.

Bestyearever2024 · 13/08/2024 19:02

How are things, @Worryworry84

Thinking of you 🥰

LakieLady · 14/07/2024 14:26

TheShellBeach · 13/06/2024 12:11

You don't need a diagnosis to get PIP.

Show quote history

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.

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 ?

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.