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.

I'm so sorry you're going through this, I can't imagine how hard it must be.

How are you doing? Have you got family near to help support you both through this?

That sounds incredibly tough. I'm sorry this is happening to you.

Thank you. I have a fantastic support network of friends and family. My normal support network would be DH but obviously he has enough to cope with. We have 3 children and they are amazing but I can see the cracks starting to show.

Shaking has just started again. Any neurologists about? I can't take another second of not knowing.

This sounds very difficult for you both but maybe it would be better either calling 111 for an ooh dr to see him or move your appointment sooner, we cant really diagnose on here.

I know. He won't see anyone until the appointment on the 3rd as he doesn't think there's any point. Also wouldn't let me call ambulance when he was paralysed. Literally dragged himself up to bed on his elbows. He was in such pain he was pulling his hair out.

I think a call to 111 is needed. Hope you get some answers soon x

He won't let me call 111. And he said if I rang an ambulance he would ring back and cancel it. Clearly being horribly unwell does not stop him being a bit of a tit.

He's probably frustrated and frightened, would he not just let you call to see if he can get seen and maybe get some painkillers or something.

He's definitely frustrated and frightened. And has mental fog and short term memory loss. This is an absolute nightmare.

Love to you both. Reading between your lines it sounds like the specialists are unsure?
Whilst you are waiting on n this terrible place you need more support.
I am a GP in another country and here are role is to support and advocate for you with specialists.
General Practice services in the UK are under horrendous strain but why don’t you phone the practice, speak to the nurse and explain and explain he seems to be deteriorating and you need help.
Very best wishes 💐💐

Thank you Luna (and everyone). I think I just have to hang on until his appointment. You're right, they haven't worked out what it is yet, just that it isn't related to the previous problem. All of this is worsened by him being unable to work.

Oh op it must be so hard for you both.

Could it be motor neurone disease. Only my mum had it and it started with her arm hurting then it lost all muscle it took them years to realise and when they did she was bedbound and passed away 3months after diagnosis.

That's what I think it is, Blaze. So sorry about your mum.

Nothing to add except a hand hold. Could you speak to your gp today? Or speak to 111 just for info?

So sorry to hear this op.

Did your DH see a neurologist when he was he was sent for the nerve conduction tests?

He saw the neurosurgeon who did the original op and he referred him for another MRI from top of head down to bottom of spine and the nerve conduction tests. I'm scared at how fast it seems to be getting worse now. The original loss of muscle tone in his leg has been going on for 3 years.

Three months is a long time to wait for an MRI result if they’d picked up anything serious. It should already be reported. Phone the neurologists Secretary or your GP and explain you need the results sooner as your husband is so unwell.

Has he already had conductivity tests and EMG? Has he had a lumbar puncture? I think if they thought it was MND or MS they might have been more timely in their investigation once he’d got to see a neurologist. So, hopefully that’s not what they’re thinking.

Sorry missed post above. Sounds like a frightening time.

I don’t know if a neurosurgeon is in the same position to diagnose general neurological conditions as a neurologist but I really hope you get answers you need at the appointment on the 3rd. Living with this uncertainty must be awful for all of you

I’m sorry - it sounds terrifying. I hope you get the answers you need soon.

How scary and horrible for you all. Is he getting help for the depression at least ?

Sounds terrifying. Can you speak to gp for you- then it’s not about him. Hopefully they can advocate for you.
The not knowing is awful.

He's refusing help for anything. He had severe back pain for years and then had his appendix out and it mostly went. I honestly think they were blaming the original surgery and that's a red herring. That's why he was seeing the neurosurgeon not the neurologist. He then ordered all the tests and I told them about the suicide attempts. The symptoms have got dramatically worse since the last appointment.

Can you get him to his gp? And make sure you get support. If it's MS it's chronic but there's medications now, thinking of you