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AIBU?

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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:
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:
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:
GrazingSheep · 19/02/2024 07:28

How is his speech ?

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?

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:
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 07:17

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:
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.

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

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

Willmafrockfit · 08/04/2024 09:21

that is a worry op, Flowers
best wishes

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

chrispychilli · 08/04/2024 10:53

🫂

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:
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 16:21

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:
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.

Towerofsong · 08/04/2024 16:36

I've had small fibre neuropathy before and am pretty sure it just gives sensations like pain, pins and needles, burning feelings. Not actual loss of function

Original poster
Worryworry84 · 10/04/2024 06:19

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.

I don’t think so, he doesn’t have a large appetite, and didn’t shakes etc, he just ate extra protein on gym days. But everything is worth ruling out thanks

OP posts:
Original poster
Worryworry84 · 10/04/2024 06:21

Towerofsong · 08/04/2024 16:36

I've had small fibre neuropathy before and am pretty sure it just gives sensations like pain, pins and needles, burning feelings. Not actual loss of function

Oh so is that something that can be reversed?
im hoping that’s the case with DH, but I really don’t think so. If his neurologist said he needs to let the DVLA know I reckon he thinks it’s not something that will improve :(

OP posts:
wanttoscreamnow · 10/04/2024 06:25

Thinking of you and your DH. Hopefully you get a diagnosis soon xx

Original poster
Worryworry84 · 10/04/2024 06:42

wanttoscreamnow · 10/04/2024 06:25

Thinking of you and your DH. Hopefully you get a diagnosis soon xx

Thanks. I hope so too. Waiting is taking up too much head space! X

OP posts:
newusern99 · 10/04/2024 10:17

Worryworry84 · 10/04/2024 06:21

Oh so is that something that can be reversed?
im hoping that’s the case with DH, but I really don’t think so. If his neurologist said he needs to let the DVLA know I reckon he thinks it’s not something that will improve :(

Show quote history

If caused by B6 it can be reversed. You need to eat low B6 and hydrate and exercise for a couple of year though. Maybe check out the understandingb6toxicity.com website and facebook group to see if this might be what he has. Some members do seem to have numbness but of course it could be something else and not this x

Notsureaboutittoday · 10/04/2024 10:20

Worryworry84 · 10/04/2024 06:42

Thanks. I hope so too. Waiting is taking up too much head space! X

Show quote history

Oh this is awful to read you poor thing. Wishing you and your husband luck x

App13 · 10/04/2024 10:24

Sadly this happened with my father , he tripped over a few times. But they thought it was sciatica.

My father has nerve conduction studies done to confirm mnd.

But he was 56 when this happened.

Yes to letting Dvla knkw.

But also tell him to be super careful or even stop going down steep stairs.

I hope it isn't mnd. My thought are with you x