Interesting article about relapses. With input from wonderful neurologist Dr Duddy http://www.express.co.uk/life-style/health/437207/Doctors-urge-multiple-sclerosis-patients-to-stop-suffering-in-silence Sorry this is not a hyper link where you can click onto to open. Couldn’t work out how to do that so I think good old copy and paste will work hopefully One of my neurologists used to really frustrate me. I would email him a relapse update. I am lucky as only tend to get relatively mild relapses e.g numb calf for a few days, burning foot for a couple of weeks. He would tell me that they weren’t relapses but were symptoms!!! I would then email back with the NICE/MS society definition I.e anything new that hasn’t happened within the last month and lasts longer than 24 hours = relapse. He said we needed to talk about it at my next appt. At this appt there was something more serious to talk about so I never got a resolution. However he really is a good neurologist in many ways. Hugs Min xx
Thank you Min & your link does work perfectly well
Whilst this approach may work in some places, I find I get constantly fobbed off with, ‘it’s only minor symptoms!’
I am currently numb down one side and fatigued to hell… Thus, have had to be signed off work for a few weeks. Thankfully my GP is great and totally understanding but my neuro makes me feel like I am making a big deal out of nothing. I am sure that not all Neuro’s are like this but I honestly dread seeing mine and he never offers any help whatsoever; just says 'keep taking the tablets, which, right now are not helping me.
Sorry about rant, but I do feel that I am left to get on with this crap & suffer in silence!
Thanks again & hugs
Thanks so much for posting this. I tend to just get on with things and not let the MS nurse/neuro know about it. I got a new neuro last year (my old one left) he told be that the last 5 realpses I’d had and been treated for weren’t relapses, just exisiting damage/symptoms playing up! He also said that this was due to heat/infection/depression (or another thing I can’t remember). When I said I didn’t have any of those things, he insisted that I must be depressed and to go home and have a think about it, then talk to my GP!!!
He couldn’t explain why the other neuro’s/MS nurses had agreed with me, that I was having relapses and treating me with steroids. Anyway I refused to go home and convince myself that I was depressed. When I saw my MS nurse she just said not to worry, that I know myself and she knows that I’m not one to ring them all the time and if I’ve been given steroids then others condiser it a relapse. She also said that in her opinion and from knowing me for several years, I wasn’t showing signs of depression so good on my for not taking any notice.
From reading this article I think I should maybe ring the MS nurses just to leave a message to let them know if I’m struggling and that I don’t need a response, it’s just for their/my records. I think they think I’m fine because I don’t ring but, to me it’s just life and I have good weeks and bad weeks. I’ll let them know in future.
I’m still uncertain as to what actually make a relapse, a relapse. I have good days and bad days, but I’m really not sure when something stops being ‘I’m just over-tired’ or ‘stressed out’ or a ‘bad day’ (or even ‘a couple of bad days’) and becomes a relapse. Started writing everything down now, with dates and times, to see if it gives me a clearer picture. I think I ought to talk to my specialist nurse sometime and see what she recommends.
The lady in the article is very lucky to have the support in which she gets. She has a great nurse, others who are not so lucky don’t.
I’m posting anon as all I seem to do is put negative stuff down on this forum latley and as a person, I am not normally negative, however, being stuck without a full diagnosis is really difficult.
Myself like many others in my position, probably do have access to a MS nurse/ team - well a phone number anyway! (even though not fully diganosed) but in my experience and when I have had attacks, I don’t know what is part of a relapse or not. Yes I have phoned my local nurses, left a message and had a call back within 24 hours, but I was basically told to go to my GP and wait for my next neuro appointment in 6 or 12 months time. Make sure that I put the symptoms on my symptoms list and bring it with me at the appointment. Yes great, the neuro will look at them, dismiss most of them and we start round again in a circle.
As far as I can see, unless you are hospitalised and considerably disabled after an attack, then with any other minor symptoms which you think are MS related, then you might as well save your pennies and not bother reporting it.
I think that my neuro isn’t interested in my sensory relapses. He only counts a relapse if you end up in hospital. My sensory relapses I believe are down to stress But my sensory relapses although not acute pain. I would describe it as chronic pain. It’s bl…dy waring and awful to have mild pain with every step you take. And it prevents you doing things that you love. Like I couldn’t do my gardening like raking leaves. So fed up. Min xx