Advice on process of diagnosis

[LJH7]

Hello
i am wondering what peoples experience is of diagnosis i terms of how long this normally takes for all tests to be complete. With Covid I am told I could wait up to a year to see a neurologist but not sure if that is just GP guessing. I am waiting for appointment to be sent. I have returned a letter to say I want to be added to wait list but not heard anything since. I would pay privately but wonder if I knew how many tests may be needed and what the costs could spiral to. Has anyone done this.

it is quite hard having to wait to find out anything and any advice or personal questions experiences would be gratefully received. Have been having symptoms around 6 months. Thanks for reading

[Music man's wife]

We went private. Hubby was already in a wheelchair and at 62 we weren't getting answers.
The consultant we saw admitted hubby to his hospital as an NHS patient and two weeks later got the diagnosis.
We'd never considered MND, so it certainly wasn't something we expected.
Anyhow that £250 was the best money we have spent, I think it would have taken forever to get a diagnosis otherwise.
Good luck, but keep an open mind 're diagnosis, I've seen too many people on here tormented by wrongly believing they have MND.

[shrew]

My late Husband was referred as a non urgent appt to neurology. A newbie GP had an hunch that something wasn't right, he was struggling to breathe and got him referred to a local hospital for an early morning blood gas appt. The Doctor discovered he was retaining CO2 and got him admitted to Preston as an inpatient the following week, it was them that diagnosed him, it had already affected his breathing, he was on cpap from the beginning. I don't think that GP's see it regularly. It would have been a few more months of waiting for the appt

[Rosemary6NT]

LJH7 I self-diagnosed February/March 2021 using info on the internet, then went to my GP. She tested my reflexes and balance then sent me for an MRI scan (which didn't show anything significant). I asked her straight out if it was MND and she said she couldn't exclude it but there could be other explanations. As there was a 6 month waiting list for neurology she suggested (depending on our finances) looking at going private. I asked her to make a private referral but I was lucky in that she managed to get a fast track appointment on the NHS so I only had to wait a few weeks. I had nerve conduction studies and the diagnosis was confirmed in May 2021.

[PeterPan]

I was referred my GP as a ‘two week wait’ case in August 2020 because my issues could have been brain tumour symptoms. The hospital reassessed me and said I wasn’t in the two week category… but I was seen inside four weeks and had tests just two weeks after that. An estimate of a year would be unacceptable to me.

[matthew55]

I was first symptoms January and diagnosed in May the same year. When it looks like a horse..... 🐴👀😁👌xx

[Zante]

I was the same as Peter in that gp fast tracked for neurology and I was seen within 10 days and had mri following day on brain and spine. Within a month of that I had ncs and emg and repeated again 3 months later and seen an mnd specialist and repeated mri x 2 all within months of seeing neurology. Happened all very quickly. I too wouldn't accept a year wait. My consultant told me last week there is currently a 9 month wait for new referrals in our area . It varies across country I imagine but there is the urgent referral process.

[Ellie]

LJH7 It can depend on the symptoms - if there is a suspicion that it is an MND, most specialist Clinics can see people within weeks.

[Hope]

I was referred under the 2 week pathway. Saw neurologist within that timeframe, followed by mri and ncs/emg. Diagnosed 3 months later. I am bulbar onset.

[TinyLady]

I'm technically in the middle of the process, but due to misdiagnosis mine is a little unconventional I think.

A private specialist neurologist referred me to an MND specialist (NHS) who saw me within a few days (end of Nov) and told me my working diagnosis, referred me for tests and I am due to go the the actual MND clinic in 2 weeks.

But all referrals have been done to respiratory consultant, palliative care etc. My GP has been contacted by the MND consultant and I have a DS1500 form... so all a bit unusual and overwhelming in my case - but they believe mine started in 2017, so has been progressing under a different "label".

At least they can move things pretty quickly when they need to (left side and speech affected)

[LindaB]

TinyLady sorry to hear of your diagnosis albeit a 'working diagnosis' . Good luck for your follow up appointments & hope you'll keep posting when you can🙏

[Hairbsb]

Hi I have just this week been told my diagnosis is veering towards Bulbar palsy (awaiting anti body results). All a bit mind blowing. All I am currently doing is sleeping from the shock of it all.

[Lynne K]

Hi I have just this week been told my diagnosis is veering towards Bulbar palsy (awaiting anti body results). All a bit mind blowing. All I am currently doing is sleeping from the shock of it all.

Sorry about that but lots of people in similar people here who can offer support and friendship xx

[Hairbsb]

Thank you. I look forward to chatting with you all

[matthew55]

I have been Bulbar for two years. I'm mute, 100% tube fed and my right arm is almost gone. On the plus side I can still go up and down stairs and I can still swallow. Life is what we make of it so try and focus on the good things. We are always here for you. 😁😊😏❤️xx