I was just wondering if anyone else has encountered this. I have recently moved house which has meant registering with a new neurologist and ms nurse. In my appointment today with my new ms nurse, she stated categorically that the relapse I suffered in August (prior to my move) was not a relapse as there were no new symptoms. This is despite being nearly bed ridden for six weeks. According to her, a relapse is when only new symptoms appear and I should have been informed of this before. This does not match what I have been told or read previously and does not lend me to want to ring her for support etc. Am I wrong in my understanding of a relapse.
Hi Shazzar,
From elsewhere on this site (my bold):
A relapse is defined by “the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection”
The nurse is clearly talking out of her hat (well, that’s the polite expression!)
What on earth does she believe it was, if not a relapse?
It would certainly not inspire me with confidence either.
I don’t have an MS nurse, and have never had one. From some of the stories I read here, I don’t feel I’m missing out one bit.
Is there another MS nurse serving the same area? If not, could you make do with GP and neuro, which is what I do?
Tina
That is what I thought and unfortunately, it seems that when you see the Neuro you have an appt with the nurse as well.
I was just so used to my previous nurse being so helpful and supportive.
I just couldn’t believe what she was saying and when I questioned it, she spoke to me like I was stupid and did not understand MS.
i must have been told the same as you shazzar. so i always said that i havent had any more relapses.
however my neuro sent me a questionnaire for some research that he’s doing.
it was asking about relapses and whether or not we’d informed our gp, ms nurse or neuro.
it was an opportunity for me to say that i had no idea what counts as a relapse but i have had times when it sure feels like i’m having one. the purpose of the survey is to improve neurological services so hopefully in the future people will have it spelled out to them what counts as a relapse.
carole x
I can’t see how you can be forced to attend an appointment with someone you’ve found so unhelpful. It doesn’t seem to be in your interests OR hers, to go through the motions with someone you have no confidence in. What a waste of everyone’s time!
I suppose, if you felt up to it, you could challenge her about “her” definition of a relapse, and go equipped with printouts from a reputable site like the MS Society or MS Trust. But I know stress and MS are not good bedfellows, and the last thing most of us need is confrontation - especially over something so silly as whether we’ve had a relapse or not, when it’s not even a borderline case!
It ought to be possible to report you’ve had a relapse, without being flatly contradicted by someone who wasn’t there, and didn’t see it.
Before I was diagnosed, I had a couple of relapses nobody saw, because (crazy as it seems) I didn’t realise it was potentially serious, and never went to the doctor’s. My neuro accepted at face value I’d had them, and didn’t start disputing with me. Even as a complete newbie to MS, I was trusted to know whether I’d had previous relapses or not. It’s not that hard, is it?
I suppose, if you didn’t mind being a bit underhanded, you could tell/ask the neuro. Not necessarily framing it as a complaint, but maybe just say you are “confused”, as you’d been under the impression you’d had a relapse for weeks, but your nurse thought not.
OK, maybe the nurse would get in trouble, but if she’s going round giving patients incorrect information, then maybe it needs someone in authority (like the neuro) to put her straight? It’s not a trivial mistake, because it could affect people’s eligibility for treatment, if she’s dismissing episodes that should have been recorded as relapses. 
Tina
Hiya
I went to see my new neuro in August (my old one had left the country). It was a few weeks before this I’d been in to see the MS nurse and another neuro as I thought I was having a relapse, they agreed and put me on steroids.
My new neuro told me that he was reviewing my whole file as it was the first time we’d met. After going through everything he told me that the most recent relapse wasn’t actually a relapse and he didn’t think that the last 5 relapses I’d had (and been treated for) were also not relapses! When I asked why he thought this, he said that relapses were NEW symptoms and not a re-occurance of old ones. He went though a list of things that can cause old symptoms to ‘play up’. This included, infection, stress, tiredness, and depression. I said I didn’t have any of those things (apart from MS fatigue which was one of the things I really suffer with when relapsing and I’ve been on a fatigue course to help deal with it). He insisted it MUST be something on that list and if I wasn’t ill or stressed I must be depressed! My mum was there with me and we both said that we didn’t think I was depressed at all and STILL he insisted that I must be. In the end he told me to go away and have a think about it and make an appointment with my GP to get some medication to help with it!
He had no answer when I asked why I had been treated with steroids so many times if I wasn’t relapsing and why other neuros had said that they were relapses. He couldn’t explain this!
I’ve now lost faith in the hospital so struggle on when I should probably be contacting them to at least discuss what is going on with me and let them know that I’m not having a ‘normal’ time of things.
Sue
x