MND

[MNDhelp]

Has anyone experience of MND diagnosis?

our father (56) has had symptoms for 8months ish (muscle weakness/shaking). He has deteriorated quickly and now is close to not even being able to feed himself. We have waited ages for all the test and subsequent consultant appointments. He is now waiting for a EMG and one of the possible diagnosis is MND.

im wondering if people have gone private for tests for MND. We’ve been waiting so long (inc things like referrals not being made when we thought they were etc). The deterioration is so quick we think it might be worth taking money from the house to go private and speed things up.

I'm so sorry
Has he seen a neurologist yet?

I think so. Each time there is a wait for a test and then a wait to see the consultant. We are currently waiting for EMG (no date yet) and know we will wait for an appointment after that for the results. It’s all taken so long and he is deteriorating constantly. Just wondering if going private will speed things up.

Yes get a private appt
Find a neuro who also works nhs
It will speed things up
Call www.mndassociation.org/

Nerve conduction studies and neurology seem to take so long to happen, no idea why given the severity of MND. I work with a lot of patients with MND at varying stages of diagnosis and this is one thing I would want done really quickly. There are all sorts of decisions and protocols for MND management but you have to have enough time to sort them.

I went private for my EMG. Obviously you also then need a private appointment to review the EMG results but for me it was worth it to speed things up.

(I had suspected myasthenia gravis, which it turned out to be, but new MND was an a possibility)

There was a bit of a wait even privately but I was offered a cancellation so it happened pretty quickly in the end

I went private for my EMG. Obviously you also then need a private appointment to review the EMG results but for me it was worth it to speed things up.

(I had suspected myasthenia gravis, which it turned out to be, but new MND was an a possibility)

There was a bit of a wait even privately but I was offered a cancellation so it happened pretty quickly in the end

*knew

Have pm ed you.

Do you mind me asking how you found a specialist/private consultant. Do you just google or is there a way to find people recommended?
had a look at the MND website but couldn’t see anything about private health care.

My GP gave me names.

But the alternative yes would be to Google I think.
Or try an MND Facebook group or similar? On my Myasthenia group people often recommend private specialists.

I am in Hampshire if that's anywhere near you I will happily recommend my specialists.

So sorry to hear that you think your dad could have MND.

I saw a private consultant when I displayed neurological symptoms, I had various tests, MRI, bloods etc. I was dx with Transverse Myelitis and two years later with MS, consultant was pretty sure the acute TM attack was due to MS, and he was right. This was over 10 years ago now. I went to the Nuffield hospital costs were £250, for first consultation, £220 for subsequent consultations, my MRI’s were £850 three scans (head, cervical & whole spine)

I went on the Nuffield website to see the Neurologists they had local to me, and selected the one, he was absolutely brilliant, and cared for me under his NHS list also. The sooner your dad can be diagnosed the better, so support can be put in place, I was very fortunate to be put on the list of a lovely MS Nurse Specialist who really helped me, at a very dark and scary time in my life.

Good luck going forward, OP.

My dad was diagnosed with MND last July but he’d been having random symptoms since two years earlier. Everything took ages with him, but I think the issue with MND is that there isn’t a specific test for it. They have to guess, in his case based off electro connectivity scans of the nerves in his legs. At least ultimately nothing can really change what happens with MND, so it isn’t like thinking “if only the cancer had been diagnosed a year earlier, they could’ve fixed it”. My dad’s MND is progressing relatively slowly, although faster now, but there’s only one drug they can give and it only slows progression by 10%.