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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 · 11/05/2024 08:03

DH always tries to play it down like he doesn’t need me at appointments etc but I definitely want to be there for him if he’ll let me. He’s just the kind of guy that likes to process on his own then talk to me.

how do I have him let me go along ?
or am I better to leave him to it?
I really want to go with him but I want to what’s best for him xxx

OP posts:
App13 · 04/05/2024 18:09

Worryworry84 · 04/05/2024 18:02

A letter arrived today, he has his nerve conduction studies in June!
I’m a bit relieved to know they’re on it and not too much longer to wait. X

Brilliant. It was pretty painful for my father so be there to hold his hand, which I am sure you will be.

I gave my father's a snickers bar straight after which cheered him up.

But I recollect a neurologist with discuss the results at a later time after it.

The best of luck and my thoughts are with you

Original poster
Worryworry84 · 04/05/2024 18:02

A letter arrived today, he has his nerve conduction studies in June!
I’m a bit relieved to know they’re on it and not too much longer to wait. X

OP posts:
FelicityBennett · 04/05/2024 07:37

Assuming the neurologist organised the nerve conduction studies give his secretary a ring to say he’s not had them yet . If you have a letter the number should be on there. You can stand next to him then whilst he does it !

Original poster
Worryworry84 · 04/05/2024 06:58

Andintotheseawego · 02/05/2024 07:54

Oh OP, this must be terrifying and incredibly stressful. Do you have family or friends to lean on?
My husband was recently incredibly ill and it was an autoimmune disease. The amount of chasing he had to do to keep things moving and happening was like a full time job.
How is your husband doing?

I do have friends and family, but I haven’t been talking about it much, I guess partly because there is no final diagnosis yet. Also DH kind of acts like nothing is happening? But he’s less of a worrier than me. He stopped going to the gym because of balance. Yesterday he was saying he’s going to go back to the gym again.

I do admire his strength to keep going though.

I am just getting so impatient waiting for answers.
how long did it take to figure out with your husband? How is he doing now? X

OP posts:
Andintotheseawego · 02/05/2024 07:54

Oh OP, this must be terrifying and incredibly stressful. Do you have family or friends to lean on?
My husband was recently incredibly ill and it was an autoimmune disease. The amount of chasing he had to do to keep things moving and happening was like a full time job.
How is your husband doing?

Original poster
Worryworry84 · 01/05/2024 13:42

Thanks all. Sorry for the late reply. Life is so hectic right now.

no more updates regarding DH other than he is dragging is heals clarifying things with GP regarding the wording of the letter.
so I’ll keep trying to get him to chase it up!
I feel like his gait is changing. Im not trying to be funny or anything, but he kind of is looking like a thunderbird or some kind of puppet when he is walking if that makes sense. It’s scaring me 😭

OP posts:
Andintotheseawego · 01/05/2024 07:07

Just checking in OP, thinking of you 💐

App13 · 27/04/2024 08:29

Thinking of you x

Josette77 · 27/04/2024 07:10

Thinking of you 💐 xx

Bestyearever2024 · 27/04/2024 06:52

How are things @Worryworry84 🥰

App13 · 14/04/2024 12:17

My thoughts are with you, stay strong x

Original poster
Worryworry84 · 14/04/2024 12:04

Thanks all. He hasn’t had a brain scan but I think That is also on the cards for next tests as the neurologist said something about checking the neurons signals.
annoyingly the letter says they are waiting the results of the electrode test etc - but he hasn’t had those yet! The wording is confusing but DH says he will contact GP next week to be clear he hasn’t had those tests yet.

OP posts:
imforeverblowingbuttons · 12/04/2024 17:23

Hope you get some answers soon Flowers

Upallnight2 · 12/04/2024 17:13

Worryworry84 · 12/04/2024 16:02

He had a letter back from the neurologist today saying that all the blood tests are normal. They’ve done a lot of blood tests.

but am I right in thinking there is no blood tests for MS or MND? Now I’m more worried.

anyway so the letter says just waiting for the other tests now. The electrode things etc.

MS won't show in the blood either, I've been thoroughly tested for it with symptoms I have. Has he had a brain mri? It would usually be a brain and spinal cord mri, and a lumbar puncture to test for ms. Also the electrode test

App13 · 12/04/2024 17:04

There is no blood test for Mnd.

Its all about collecting information from various specialists and family members.

Though nerve conduction studies do tell some of the story.

The most heartbreaking thing is that MND reveals itself eventually.

With my father for instance I checked every other disease with the symptoms including lymes disease.

My fathers private neurologist told my mother not to waste money on private diagnoses as my father's allowances were maxed out.

If you need any help or advice at all, please feel free to dm me.

Original poster
Worryworry84 · 12/04/2024 16:02

He had a letter back from the neurologist today saying that all the blood tests are normal. They’ve done a lot of blood tests.

but am I right in thinking there is no blood tests for MS or MND? Now I’m more worried.

anyway so the letter says just waiting for the other tests now. The electrode things etc.

OP posts:
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

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

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

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:
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 06:21

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:
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:
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