Relapse....who decides?

Hi

If you feel like you are having a relapse, who decides if you really are?

I went to my GP who says they have to wait until the MS nurse agrees with my assessment before I will be given steroids. I’m interested in another peoples stories

The last time I was delayed, it got worse and I ended up in hospital unable to walk. I was up numb from the waist down until I was given the steroids over 3 days. I have been left with mild numbness. I feel I am relapsing again, but I have to wait until they can get in touch with MS nurse or Neurologist

You don’t. If you feel that it is a relapse head to your nearest A&E department. It’s your health and deterioration that’s at stake here. You’re the best judge. If it were me I wouldn’t be prepared to take a chance and play the waiting game.

  • Good advice poppy,I feel that I’m starting to relapse again ,I felt it starting on Friday afternoon,by 8pm I was in all but a heap.fatigue Is terrible,headache,well feeling as if my brain doesn’t belong to me.I went to bed at this point,got up about 10pm and fainted,hit my full left side a great thump .outcome,bruised,knee,wrist,hip and oh!my poor boon.I’m now feeling so sorry for myself.

Basically, a relapse is new or repeated symptoms that last more than 24 hours. So it can be something completely new, or something you’ve had before that has remitted.

It doesn’t really matter who decides. If you have symptoms that are clearly neurological, as long as you’ve had them for more than 24 hours, then you don’t need an MS nurse to confirm what you know.

Have a look at: A-Z of MS | MS Trust

Your GP should be able to prescribe steroids if you are clearly having a relapse. If they won’t, then as Poppy suggested, take yourself (or be taken), to A&E. Or you could try phoning your neurologists secretary, ask if a fax could be sent to your GP. Personally I think I’d rather not try this route, while it ought to work, in practice, I bet it’s a lot slower than just seeing your GP, taking a copy of the MS Trust info and insisting.

Sue

Hi,

this is my first post so apologies if I do anything wrong! In December I went to the relapse clinic with new symptoms that I’d had for a couple of months! These were facial sensations and numbness; previous symptoms were all based around my legs/below the waist.

when I was at the clinic the Doctor thought that it might be a relapse but was 60% sure that is was due to anxiety and not a relapse! She told me to up the Gabapentin that I was in to see if that helped! I was slightly frustrated when I left because I’d left it to the point when I could quite happily have ripped my face off but was dismissed! These were new symptoms, I’d had them for more than 24 hours…and actually still have them!

Sorry not much help but difficult to know I guess. I was only diagnosed last year and one minute it seems like you’re being told to keep track of your symptoms but then the next minute you’re too hyper vigilant! Not sure what the answer is!

I hope that you’re soon feeling brighter and that you get the help/support that you need.

Heids

Thanks sue,I have a g p appointment on Wednesday anyway.also have stroke clinic that day as well.so I will see them about steroids or something extinct post should have said b o o b

not boon think kindle is playing silly beggars again. I have always been left to my own devices,regarding symptoms of my m s(all due to first neurologist I saw,that was the man that told me everyone had my type of lesions) he was a locum and truly not worth a s&$#.

do we get steroids when we have a relapse?

I’ve never had oral steroids. I’ve only ever had IV steroids in hospital, having hit the deck in the small hours trying to get out of bed and been partially paralysed temporarily.

  • I don’t want to go to hospital I know it’s silly and if needs must so be it.I just lying down take fluids,rest and feel like a 10year wanting her mum.hubby wanted tome to go to a&e on Friday but I just took my killers and put on my tens machine.I don’t want to appear to be a pain because I have m s.

You’ll get steroids from your gp if needed,the hospital neuro can give you stronger ones which the gp can follow on from.

Hope you get help soon.

I understood a relapse to be repeated symptoms and an attack to be new symptoms.

Relapse = attack = flare. There is no difference. And new symptoms / old symptoms - either counts.

Sue

Hi

this is my first time on forum. I’m a 43 year old women. Who was diagnosed with optic neuritis in 2011 two weeks after my wedding by moor fields. There was 2 legions on left side of my brain and white matter. Told it could be ever a virus or ms. In April 2015 I woke up with both hands numb and tingling. Went GP and was thinking it was something else and would pass. This has never gone but some days better then others always worse of a night. In august 2015 really bad lower back pain and pain in neck and shoulders and when walking to work as there was a train strike my right leg went, I was unable to control it as my foot slammed down on the ground and my foot felt numb. I believed my arch had gone. Then a weakness in my right arm started I was unable to carry a cup of tea up the stairs, as my arm would slowly start to lower and my left hand would help hold the tea. Went back and fourth to GP and final got a MRI on lower back and neck. New I was in there for a long while. Was referred to a neurologist which was going to take 6 months. Went private and was seen in a week and was diagnosed with ms. Was referred to my now neurologist nhs who carried out MRI on full body and brain. Lumbar puncture and checked my eyes reaction. Was seen 20 minutes after MRI where I was diagnosed with RRMS in November 2015. And given a specialist nurse. And was started on tecfidera was on these for 6 months, in January 2016 my dad was seriously ill and passed away in July. When results of second brain scan came back my ms was highly active and tecfidera had not worked. I’m now on fingolimod on both drugs had to get through first 3 months of side effects which have now past.the 4 weeks between drugs I felt amazing and full of energy and like my old self again. My MRI in December shows fingolimod is working and no new legions on brain and spinal cord. Which is great news. Now Being prescribe drugs to help me with this terrible exhaustion and fatigue I keep getting on and off. MS is hard to diagnose as when my neurologist was asking me questions regarding symptoms I feel that most people could show these signs but be ok. Really hoping I get some energy back. Can’t drive for longer then 45 minutes and had to send off licence where I will be reviewed every 3 years unless my health changes, haven’t spoken to anyone with ms before as I’ve been in denial and I’m coming to terms with it now slowly.

Chrissyb

Thanks everyone.I’m just so s$&# at the moment.don’t know whether to cry or just put my head under the pillow(don’t mean to suffocate) just to hide.I will phone m.s nurse the morrow.to see what she says .

Hi Chrissy

Welcome to the forum, the club that no one really wants to join, but finds it useful nonetheless!

It does sound like you’ve been on a journey, to be diagnosed, then to be put on the best DMD (disease modifying drug) for you.

You’ve joined onto a thread that was started with the question ‘relapse … who decides’. So you may not get very many relevant replies to your post. If you want to start a new thread, just hit the button marked ‘New Thread’, give it a title and then you can ask questions, tell us how you feel, or whatever you like really.

Sue

A poor you Rosie. It’s horrible having a relapse, never mind having to try and argue with the GP about whether it is or isn’t a relapse. Have a good rest today and try phoning the MS nurse tomorrow.

Hopefully the relapse won’t stay with you too long.

Sue

Most of the time the person who decides whether I’m having a relapse is me. Most of my relapses have been inconvenient, rather than disabling. The only time I was put on steroids was a very bad relapse more than ten years ago. A neurologist decided that the relapse was bad enough to require steroids to treat it, my GP prescribed them. The relapse lasted nine months and the steroids didn’t seem to make much difference. The side effects were so bad that I’d rather not repeat the experience. Maybe IV steroids aren’t as bad.

From what I can recall, in these parts it is the MS Nurse Specialist who deals with this, assessing people and organising them into ad hoc relapse clinics for IV steroids or whatever. GPs don’t usually get involved in managing acute relapses - not here anyway.

Alison

In my area, there’s virtually no chance of getting IV steroids for a relapse. Oral steroids are quite easily prescribed by my GP tho, I only have to say it’s an MS relapse and can I have some steroids and they’re issued. Years ago, my then MS nurse (the much mourned Lisa who died last year), contacted the GP, gave them loads of info about MS and high dose steroids and did a great job of educating the surgery.

That might be what you need to do, get someone like an MS nurse to liaise with the GP on your behalf.

Sue

  • Thanks Alison & sue,m s nurse phoned me today anyway.told her about the state I’m in so she recommended I come to her m s clinic tomorrow then she will see if it’s m s or something else.here it’s her that deals with the steroids and admission to m s hospital unit
  • As I said in the other post it’s the start of my treatment tomorrow.so everything crossed.
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