Last reply 6 months ago
Rant alert!!!

Hi,
I have just received the mail to discover that my long awaited appointment with the neurologist which was in May has now been cancelled 😡! I still don’t have a diagnosis but when I saw consultant in January he said it was pretty likely that I have MS!
I had my MRI which showed lesions on my brain also LP and bloods were done last month.
This is driving me mad 😝 they said they would be in touch soon with a new appointment? Chances are it’s gonna be longer than May to wait.
I know the process takes time but feeling really fed up 😢 just want answers!!!!!!

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aabreu
6 months ago

Geez man. What the heck is with all that? You think that could pick up the phone and negotiate with you. Is there a phone number? I would be calling over there and tell them you want to get on a wait list. Or you are okay with seeing another doctor. I’m a very persistent person.


stumbler
6 months ago

@dmt727 , contact the Patients Advice and Liaison Service (PALS) at your hospital and see what they can do to help.

If you able to respond at short notice, you could opt to accept a cancelled appointment, to get in there quicker. 😉


grandma
6 months ago

I assume you are in the UK. It is a postcode lottery about when you are seen If like me you live in the midlands the wait is even longer. I haven’t seen my neurologist for 7 years, luckily the MS nurse knows more than him. Stumbler is right, try your PALS office, try anything and everything you can, as a Neurologist once told me20 years ago ms is a very unsexy disease, no one is going to get medal for curing it, so they really aren’t interested, you sadly have to fight your corner. Good luck😍


vixen
6 months ago

Hello @dmt727. That’s horrible being kept dangling in that way. Jan to May is bad enough but if even longer……I’d like to see them try that lengthy process with deciding if a woman was pregnant or not! Sad to say, but we need to be our own agents and advocates. Starting with PALS is the best start, as well as keeping pestering the neuro team. As we all know, the service n the UK varies so greatly between regions. Have your symptoms been changing at all? If so, you could use that as ammo for pleading your case. Good luck, and please keep posting about how you’re doing 🙂


joanne46
6 months ago

Can’t you beg,borrow and plead enough money to pay for a private consultation with an ms specialist privately (that’s what I did) it costs around £150 and was diagnosed there and then and chose my treatment. I was treated within 2 months with lemtrada. I see Doctor Woolmore at the QE In Birmingham


joanne46
6 months ago

Btw once diagnosed by Doctor Woolmore all my treatment etc was paid for on the nhs


dmt727
6 months ago

Hey,
Thanks for the replies 😊
Joanne46 can I ask how you went about getting an appointment privately?
Did they have access to any mri scans or bloods that you had previously had ?
I could afford to pay just not sure how I do it.
We live in Wiltshire.


wjgregg
6 months ago

Just like Joanne, I paid privately for a consultation. I had mine in Leeds. The best thing, for me, about going private is that I was able to choose a neurologist who is a multiple sclerosis specialist. Not all neurologists are. I know of a major hospital within 40 miles of me where there isn’t a single MS specialist, and it is a “multiple sclerosis centre”. The only MS specialist left months ago, and went to Liverpool. The MS nurse there told me that “they are 5 consultants down” on the number they should have.

It’s easy to find an MS specialist consultant on the internet. I would start with your nearest private hospital, find their list of neurologists and examine their qualifications/specialties. You should be able to get an appointment very quickly. As you will be paying privately, all your paperwork will find its way quickly to your chosen specialist (it certainly did in my experience. Just like Joanne, the N.H.S. took over thereafter (I am under the care of the same specialist neurologist, in whom I have complete faith).

Good luck in your quest. I hope it goes well for you.

Best wishes,

Jon


purplekath
6 months ago

Hiya, I also had my appointment cancelled to get my results and then was told they were not booking appointments at present as my consultant was away for four weeks. Do what I did – phoned my GP who phoned the consultants secretary and relayed the results to me the same day. Good idea to go to PALs but I found this much more immediate. It was amazing how quickly I got an appointment when the Consultant got back after the GP intervened. Good luck!


niccis
6 months ago

I’d recommend PALS too. Sadly, cancelled appointments seem to be pretty commonplace in the East Mids where I am. I’ve waited since last April and only got seen last month to change medication which they’ve known for a year was ineffective for me. Keep phoning and fighting, make a total nuisance of yourself. It shouldn’t be that way but sometimes its the only thing that works.


dmt727
6 months ago

You guys are amazing and so supportive, thanks 😘

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