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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:
newusern99 · 08/04/2024 16:23

You mention he had been going to the gym a lot. Any chance he has been eating lots of chicken/ tuna and taking energy drinks with lots of vitamin B6 in. Too much vitamin b6 can cause a toxicity known as small fiber neuropathy. I'm not sure if his symptoms match this but if he has been taking a lot of vitamin B6 it is worth investigating further.

Original poster
Worryworry84 · 08/04/2024 16:21

Towerofsong · 08/04/2024 07:26

I am so very sorry you and he are going through this. And I'm angry on your behalf at how long these appointments are all taking to come through.

Is your husband still able to work? He might be able to claim PIP etc if not, or even if he can but needs help with other things.

He is still able to work right now with what he is doing.

but if that changes there may be a post he is more able to do.

hopefully we have more answers soon.
not knowing the full story is so hard. Hard to accept what I don’t understand
thanks x

OP posts:
Original poster
Worryworry84 · 08/04/2024 16:19

StylishM · 08/04/2024 09:18

Sorry to hear this OP. If you have life and critical illness protection, you may want to look into making a claim

We do have that. We may have to wait until final diagnosis. thank you for the advice x

OP posts:
Original poster
Worryworry84 · 08/04/2024 16:18

Glumgal · 08/04/2024 10:50

Gosh that's such a worry for you. I know they'll have checked for diabetes as a possible cause but have his B12 levels been checked? I'm just wondering whether boosting that would help with his symptoms. Hugs x

Hi thank you. He’s had is B12 checked and that was fine so they have ruled that out.
I think that was the first thing checked when he went to the GP last year but the neurologist also checked it again recently.
x

OP posts:
chrispychilli · 08/04/2024 10:53

🫂

Glumgal · 08/04/2024 10:50

Gosh that's such a worry for you. I know they'll have checked for diabetes as a possible cause but have his B12 levels been checked? I'm just wondering whether boosting that would help with his symptoms. Hugs x

Willmafrockfit · 08/04/2024 09:21

that is a worry op, Flowers
best wishes

StylishM · 08/04/2024 09:18

Sorry to hear this OP. If you have life and critical illness protection, you may want to look into making a claim

Venturini · 08/04/2024 07:33

heldinadream · 01/10/2023 07:55

Sorry but I think not wanting to worry him is daft, he SHOULD be worried, it's a worrying symptom and he should see a Dr ASAP and nothing else matters really.
Good luck OP.

💐 sorry to hear that OP. Wishing you both all the best

Towerofsong · 08/04/2024 07:26

I am so very sorry you and he are going through this. And I'm angry on your behalf at how long these appointments are all taking to come through.

Is your husband still able to work? He might be able to claim PIP etc if not, or even if he can but needs help with other things.

Original poster
Worryworry84 · 08/04/2024 07:17

Also the letter stated it’s not just his toes but also his fingers have weakness now too,
the neurologist observed muscle loss between the fingers, a bit in the arms but more in the lower limbs.
up until 6 months he was going to the gym 4/5 times a week but had to stop because of his balance

OP posts:
Original poster
Worryworry84 · 08/04/2024 07:05

Oh and his speech is fine but sometimes he talks like he has a bubble in his throat and doesn’t seem to notice until I point it out :/

OP posts:
Original poster
Worryworry84 · 08/04/2024 07:04

Hi guys
sorry for a long delay on replying.
DH recover a letter from the neurologist last week with basically a round up of the last appointment.
its says that so far he has progressive peripheral motor polyneuropathy but that it doesn’t exactly fit with everything, and doesn’t know a cause yet or if that’s exactly it so he has to have those electrode tests to further diagnose and some other kind of test.
hopefully soon because I hate this waiting game and it all sounds scary.

And DH is upset because he can’t take our toddler to bed because of his balance.

and now I’m freaking out for my DH and toddler of the things they might not be able to do together :(

OP posts:
Andintotheseawego · 19/02/2024 15:32

Did the neurologist give any indication into what it could be? I'm so sorry you're going through this, it must be incredibly scary for you both. Do you have a good support network around you?

GrazingSheep · 19/02/2024 07:28

How is his speech ?

Original poster
Worryworry84 · 19/02/2024 07:08

DH had his appointment with neurology this week.
the neurologist also did some test with his hands that seem to have been affected with weakness (DH hadn’t noticed but I have noticed him dropping things more frequently) and muscle loss between his thumb and finger.
he gave more bloods and next will be one of those electrode tests.
DH still says it’s nothing to worry, but he was told while he can still drive for now he should let the DVLA know which only makes me think they think it will get worse?!
im so scared :(
x

OP posts:
Original poster
Worryworry84 · 04/02/2024 13:45

@heldinadream thank you.
DH does not show his worries, but he could be hiding because he know how worried I get!
although he is the type not to waste a worry, he deals with things as they come!
i did catch him googling symptoms at one point which he never does, so I think he is more worried than he is letting on.

he does acknowledge it needs checked out though and doesn’t want it to get worse but he tells me it’s probably something a little physio can fix (not sure if he really believes that or just trying to relax me about it all..) x

OP posts:
heldinadream · 04/02/2024 09:09

Oh gosh @Worryworry84 this is still going on, and getting worse? When's his appointment?
I hope it proves to be something simple and easily sorted. Very best wishes to you and DH and DCs. How is he coping with it now, is he still a bit blasé or getting more visibly worried?

Original poster
Worryworry84 · 03/02/2024 20:52

zoom1982 · 03/02/2024 20:25

Sending you so much love

Show quote history

Thank you so much. He has had a referral to neurology and the appointment is later this month. Fingers crossed it’s nothing bad but he’s been dropping things more often these days and his knees have given way a couple times (not to the point he has fallen but almost..) it’s scary but at least they are looking into it and hopefully it’s something that can be fixed x

OP posts:
zoom1982 · 03/02/2024 20:25

Worryworry84 · 03/12/2023 12:19

DH finds this hard to answer as he says maybe he’s just more conscious about it now!
but it did start with one toe and now it’s two, and I’m trying not to panic but I can’t help it 😭

Show quote history

Sending you so much love

Original poster
Worryworry84 · 03/12/2023 12:19

GrazingSheep · 03/12/2023 08:31

Has it got any worse?

DH finds this hard to answer as he says maybe he’s just more conscious about it now!
but it did start with one toe and now it’s two, and I’m trying not to panic but I can’t help it 😭

OP posts:
GrazingSheep · 03/12/2023 08:31

Has it got any worse?

Original poster
Worryworry84 · 03/12/2023 08:27

Are there less worrying things this could be?

OP posts:
Original poster
Worryworry84 · 01/12/2023 16:26

DH has had an MRI scan on his back which was clear, and his blood tests (which he said were checking for vitamin b deficiency) came back normal.

so the GP is confused and referring him to a neurologist and now I am panicking again! 😭

OP posts:
Original poster
Worryworry84 · 20/10/2023 08:07

Thansk all.
just came to update as you’ve all taken the time to say something.

My DH did go to dr, she thinks is more mechanical rather than medical so here’s hoping! She thinks maybe a slipped disc but is shocked he hasn’t felt any pain from that if it’s the case.
he gave blood yesterday so they can rule things out and he will get an mri scan.

she checked for muscle weakness and said there is an imbalance - he is slightly weaker on the left side so she doesn’t think it’s a vitamin b deficiency but will rule that out too.

so fingers crossed it is something that can be fixed! Or at least stopped from getting worse!
we have a Little one who arrived after a long wait last year, and DH is struggling to run after etc :/
thanks x

OP posts: