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

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.

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.

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

Hope you get some answers soon

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.

My thoughts are with you, stay strong x

How are things @Worryworry84 🥰

Thinking of you 💐 xx

Thinking of you x

Just checking in OP, thinking of you 💐

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 😭

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

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 !

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

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

Sending hugs, it's good he's booked in for the study soon

Wait outside, as he may not be fit enough to drive after as it is painful

My thoughts are with you

He needs to visit gp as soon as possible.

When it comes to going for the tests he'll probably be glad to have you there. It may be that the pre test blurb will advise him to have someone there even if it's only to drive home.

Good luck with it, I've got everything crossed for you both.

He's been going to the doctor and hospital for many months as discussed in the thread.

And to be fair, a gp can't do anything but refer

I hope everything goes as smoothly as possible for your DH and for you.

Hi, OP - just wondering how your DH is going?

Have been thinking about you and your thread ❤️