To be worried about DH symptom

[Worryworry84]

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

Yes thinking of you OP 💐

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

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

How's things @Worryworry84

Thinking of you ❤️

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

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

Absolutely. That's what I'm hoping ❤️

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

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

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

Oh bless you @Worryworry84

Sending you loads of love ❤️

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 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

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

Strangely, this post popped into my head last night!

Hope you're OK.