I think DH is dying

[TerrifiedandWorried]

He has been unwell for ages (years) and has now reached a point where his left leg has completely lost any muscle tone. It's skinny and wasted. He has severe pain on and off and has had bouts of temporary paralysis from waist down. He also has periods of severe shaking. He is suffering from depression as a result and has twice attempted suicide (that I know of).

He had a lypoma removed from his spine 14 years ago and I think this is muddying the waters. An MRI showed nothing on the original surgery site so they have done another one. He has had nerve conduction tests which show that he has lost 85% function.

I don't know why I'm posting really. His next appointment is 3/12 and he will get results of MRI. I'm assuming it is MND or MS. I cannot see any good ending for this.

Not really
They couldn't guarantee it would be discussed at next week's meeting. But they said they'd contact us after. Whatever that means

That's really bad op. Can you complain to pals? Did he give you no information or give any advice?

We had to ask specifically for every little scrap of information. A friend (who has inside knowledge of the NHS) has offered to help us through the complaints process.

There just wasn't much positive about it all tbh. I hope we managed to convey just how much the whole family needs a diagnosis.

Sorry to hear that. It might be worth going to see your gp who could contact the consultant direct.

How is your DH doing now?

Would you consider asking for another referral to a different hospital?

So the weekly meeting will have other experts, and they will organise tests. sounds positive. although their attitude less so by what you have said.

I know it must be an awful situation to be in, and that you must be feeling fobbed off, but if it's unclear and they just don't know what is going on they they just won't be able to give a diagnosis.

I would recommend chasing regularly so you don't get forgotten in the crowd of papers. And attend A&E if there's an event again like the shaking or the severe pain, so it's on the radar officially and you get a chance to see another consultant in A&E and get their thoughts on what could be going on.

OP just clocking in to see how things went and did you eventually get a diagnosis for your DH?