Hi all,
After 4 months of waiting for my ‘urgent’ neurology appointment, I got my appointment letter last week. It’s for tomorrow, 10th May.
Just got phone call from hospital, to say that they can no longer do a face-to-face appointment. The consultant will phone me instead.
He’s going to do a neurological exam on the phone. It’s not even a video call. The booking lady said that it will be fine as he has my medical history, and if I want a face-to-face, I’ll have to wait several more weeks. I’ve already done 16 weeks of pain, I don’t want to wait any longer.
I said I could weep, but actually I am. I’m so frustrated and disappointed. How can he get any sense of whether it is my peripheral nervous system or central nervous system that has the problem.
So wishing I’d let my family pay for me to go private back in January.
Has anyone got any tips for a phone appointment?
Thanks
Paula
If this is your first neurology appointment it might actually speed things up for you rather than wait for a face to face. It might be that the neurologist is going to start the process of diagnostic tests, MRI scan, lumbar puncture, evoked potentials, so can easily talk you through that on the phone. Have someone with you and your phone on loudspeaker, it helps to have someone listening in and they can remind you if there’s something you wanted to ask, but somehow miss, and pick up anything you might miss. The consultants always lead the consultation, but please don’t be afraid to speak up and good luck 
Hi Paula, I know how scary it is waiting for tests and answers. I also find it bizarre that your neuro is doing this by phone.
But he/she will be able to get a good sense of what’s going on. He will likely orders meds and painkillers.
Hang in there chick. We’re here for you.
Boudsx…a vet with 25 years of MS experience!
Thanks both. Got my big pants back on & got new lists made up, with symptom locations on so I don’t end up trying to point.
I’d ask my hubby to sit in with me, but I don’t want to mention the full list of symptoms in front of him. I’ve not wanted to worry him, so I’ve been hiding things. Thought certain things could wait until I knew if they were permanent or not.
Paula
Good luck for a productive consultation, despite everything. Marshal your facts and ask your questions, and you will have done your best and can do no more. It’s not ideal, though, is it? I wish that life was being a little easier.
I’m a Paula in a similar situation, 3 years of blood tests, mris ect ect finally someone listened and I was referred as a urgent case to neurologist still waiting. Escalated it up by getting my gp to push and now the consultants, are having a meeting to view my medical history to see if I need seeing… you couldn’t make it up. I’d been told by a nuro surgeon after he did some tests and said I’d long track signalling issues that I needed seeing urgently so how come the neurologist can’t just think yes another consultant thinks they need seeing so it must be right.
Good luck and I hope you get answers soon
Hope you get answers too!
Hmm. 9 min appointment.
He let drop that last time I saw him (2015), he thought it was ms, but mri was surprisingly clear. He’s now wondering if it’s functional, rather than neurological.
He’s ordered an mri, nerve conduction tests, and a whole battery of blood tests. He’s also warned me that Covid means that the waiting lists for the nerve conduction tests are several months, and the mri even longer.
I’m really hoping that the blood tests pick something up!
He also said that I will get the results by letter, and I won’t see him again (oh the irony) unless the tests show something.
So, I’m:
- really happy that I’m now in the system
- really frustrated that I have more waiting to do
- really worried that they won’t find anything wrong
That last point is because I asked him what happens if it’s functional, and he said I have to learn to live with the symptoms. I’ve just looked up functional disorders, and can’t see the match. It also says on the NHS website, that you shouldn’t make the diagnosis just because you can’t find another explanation.
Hey ho. Life in limbo continues.
Hi again.So yeh, you’re in the system and have to wait.
My journey to diagnosis took 22 years and turned me upside down and inside out!
18 months ago, I was so low and I turned to Jesus. I gave my life to him. I feel much more settled and well armed to cope with my life.
If you aren’t already a Christian, then why not think about it?
I’d be happy to help you with that.
Love Boudsxx
I couldn’t agree more about FND being a proper thing rather than something they shrug and say you’ve probably got because they’re out of ideas. Have you come across the excellent (I think) neurosymptoms.org site?It’s a good resource for explaining what FND is and what it isn’t. You’re a long way from a dx of that or anything else, by the sound of things, but at least, as you say, you’re back in the system. I’m sorry it’s such slow going.
Thank you. Hadn’t come across that one, so will have a look.
what a load of TOSH. what covid? the figures are going down all the time, in my area we have 2 cases, in yate where my brother is less then 3. i just think now they are using COVID not to work.
I saw my neurologist in March for a catch up. prior we did a phone call but that was MY REQUEST. he will see me later in the year. but i can contact my MS nurse if i need him. i am sick of covid.
FND is a real thing. However, they cant give you FND if they find anything on your tests. i had a second opinion years back one expert MS guy said i had FND, but admitted he hadnt seen my notes lol. 2 weeks later i got a letter from him, sorry i cant give you FND as i have now seen your notes and they have too much evidence to give you that diagnosis or words to that effect. oddly enough when i was taken into hospital in 2020 with a collapse i saw him, he said it was my MS i had overdone it, he didnt recognise me lol. I am like bouds a long term MSER. started 2000 then got diagnosed in 2016 with primary progressive MS, my neugoloigst has been with me all the way since 2007.
the problem is not enough neuros even understand PPMS so many are going undiagnosed.
I havent been on for a bit simply because i find this new forum too hard to deal with, and way too many old posts get dragged in.
ITS A WAITING GAME. the myth is we go to neuro one day get diagnosed the next. NOPE even back then the waiting times were long and i paid to see mine privately even paid for MRI which were surprisingly not expert. its always been a waiting game.
the nerve conduction test waste of time.
MRI and VEP is all i had. the second VEP gave me diagnosis.
yes i had an LP but it muddied the waters and the nerve conduction test was inconclusive. now my neuro just does MRI and VEPS. BLOOD TEST ARE NOT FOR MS.
The numbers of current COVID+ patients isn’t the issue, the impacts on waiting lists and staffing levels continues and backlogs and delays that we all face are caused by the the three years of COVID prior.
To say it’s a load of ‘tosh’ is not helpful in the least. To imply that neurologists/staff are “using COVID not to work,” is an arbitrary, whimsical suggestion.
You’re really talking way off guidance and you give the impression of being angry.
I never put any words in your mouth, infact I qouted you, directly. Quite the opposite.
No one said you’re not entitled to your opinion either and I simply gave mine.
You’re still not helping anything by suggesting that COVID is not to blame. It is. I work for the NHS and nothing is anywhere near where it was prior.
It’s also not my job to be a SAGN and correct your idea that being whimsical and arbitrary can’t be. That’s you going way of track again.
One of the issues with Covid is Long Covid which for some people includes neurological issues, so additional demand for MRI scans and nerve conduction tests. Plus the backlog. Neurology units have for a long time been under-staffed and have had long waits, so they don’t really have the capacity to shorten the even longer waiting lists.