In a nut shell, a few months back I was having a really bad couple of weeks. Constantly exhausted, loss of vision again in pain and just generally weak and horrible. I tried to call my ms nurse, left her 3 messages that were never returned. I ended up calling my neurologist to get an urgent appt He said basically Im just having a flare up of symptoms because I’ve had a couple of headaches and just to take it easy. I honestly felt like a drama queen and that I was wasting time. I’m now having more. Symptoms. Weak, burning arms. My right arm is so stiff and heavy I’m constantly dropping things. Also ridiculously exhausted and just usual back / leg / neck pain and weakness. I feel like I don’t want to talk to anyone about it because I feel like I’m being over dramatic or just wasting people’s time. I don’t know whether these are Ms symptoms or whether I’m just a bit run down. Just feel like I have nowhere to turn and I’m just getting on with it, working and carrying on normal week routine and I just sleep and cry all weekend and it’s no quality of life.
To be honest, if you have the symptoms you ‘normally’ experience, just much worse than usual, then it’s maybe not a relapse. But could be described as a ‘flare up’. I suppose.
If, on the other hand, you are experiencing new symptoms, or repeated symptoms which have remitted for at least a month before returning, then it is a relapse. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse
This doesn’t excuse either your MS nurse or neurologist for their poor care.
If I’d left more than one message to my MS nurse and no one had got back to me (even the admin assistant), then I’d be absolutely pi**ed off. But I have an email contact address for mine. I sent her an email at the end of last week to ask for some advice. The admin replied, said she was on holiday and said he’d forwarded my email to another specialist. When my MS nurse go back to work, she phoned me (yesterday). That is what you want and should be able to expect from a specialist nurse service.
Equally, when I have the need to contact my neurologist, I either write to him or email his secretary, who then forwards messages to him. That way, I have a paper trail and the doctor can’t get away with such dismissive words. He would generally reply to me in writing.
In your situation, have a look at the MS Trust information about relapses. Decide for yourself if it’s a relapse or not. If it is a relapse, think about what action you want to take. Do you want steroids? Do you need a new MRI to see if there’s been inflammatory activity that shows your DMD isn’t working? Or do you just need some time off work? (The time off work question applies if you decide it’s not a relapse too.)
If you want steroids or a Doctors certificate, then get an urgent appointment with your GP. If you actually want/need to see your neurologist, then write to him/her. You can do this urgently by phoning his secretary and getting his/her email address and asking her to forward an email with all the symptoms detailed. Be nice and polite. You may feel quite aggrieved, but that’s not the secretary’s fault. And even if it is, they are the gatekeeper for the neurologist, so you need them on your side!
If you feel very strongly that the care you’ve receive is substandard, you could go via Patient Advice and Liaison Services (PALS). You’ll find their contact details on your hospitals website.
I hope you take some time off work to rest and try to get over this period. And that you start to feel better very soon.
I had one at North Tees hospital who promised me that he would find out what was wrong with me. He ordered a head Mri on a 3 tesla scanner and six weeks later his acolyte, half my age, was telling me there was nothing wrong with me and to see my GP about my symptoms!
So yes, I have been let down by a neurologist.