Hey everyone. I was wondering if I could get some help.
March 2022 I suffered an extreme attack on my body which I think was my first MS attack , although looking back I’ve had a lot of symptoms over the years and my grandmother also had MS.
I spend 6 months in and out of the GP surgery getting bloods for everything under the sun, including urine samples, stool samples etc and all came back ok.
Since last March my life has changed. I think I suffered ON which has left damage to my right eye. Some mornings I wake up and my vision is dark and blurry and takes a while to kick in. When I’m tired i have the same visual issues.
Other problems are general fatigue. Killer back pain but nerve related and not muscular . Weird sensations in my body. When I go to bed at might my muscles twitch and I have involuntary movement in my feet and sometimes fingers.
I have requested a nero referral and the GP explicitly said I could be waiting 3-5 years on this.
I have ended up going onto an anti depressant because I know I am living with what is likely MS, I look fine, but I feel terrible and it’s very hard explaining to people without a diagnosis.
I actually feel quite alone. And not sure how to expedite this nero appointment/ MRI. Does anyone have any tips on how to get through this initial stage of getting diagnosed / where to get support/ how to speed up medical appointments.
Thank you
30 F
Where do you live? Northern Ireland? Most of the UK is much shorter than a 3-5 year wait, but I know NI is bad.
The obvious alternative is to have an initial private appointment with a neurologist. Others know more about that than myself.
Some GPs can order MRI scans if they think one is warranted. That might be worth discussing with your GP. It may be that they can’t - not all areas can.
If you are in Northern Ireland then:
I’m not sure how easy it is to get an appointment in England if you are in Northern Ireland, but you are entitled to it as a UK resident.
In theory you can get appointments in the EU, under EU legislation transposed into domestic law, but that had hit legal obstacles. There are supposed to be some arrangements for treatment in the Republic of Ireland under the Cross Border Healthcare Directive.
Hey thank you for the response. Yep I am indeed in Northern Ireland. Hard to believe the backlog of neuro appointments. Think at this point my best option might be private!
What does your optometrist say about your vision? They are very well-trained in matters relating to eye health, and if you have not already has a proper consultation with yours, that’s a quick and easy way to get started. If they feel there are matters of concern that need specialist investigation, they will write to your (rather laid-back sounding) GP to say so, which might spur him/her into some sort of action. If you have had your eye health checked out already then good for you, but if you haven’t yet, it’s high time you did.
I am sorry that neurology times in NI are so atrocious. That’s been going on for years - hasn’t it? - I remember seeing something in the papers ages ago.
Hi there was a 10 month wait when my issues began.
I went private costing £200, saw a neuro in 2 weeks. and then saw same neuro on NHS.
Consider that eh?
Boudsx
My mother was the same except hers cost around £800 but she was seen within a few weeks and then the rest of the appointments were on the nhs but she saw the same neuro
Do you have any healthcare through work? As some will refer and pay for private appointments for you
I’m wondering if getting a private appointment with a neurologist who also works at the NHS Walton Centre, Liverpool might be a way to go, given it is a very good MS centre and there seem to be cheap flights, or expensive ferry. Just a thought.
That’s where I got my diagnosis…after 22 years with local hospitals gave up on me!
Boudsx