Last reply 2 weeks ago
relapse or flare up and steriods

Hello.

My MS has kicked off again. I called my MS nurse this time (I usually go to my doctor and they refer me to hospital) as I want to try and keep out of hospital – its a 40 min drive and I’m struggling for people to take me.

She said that as my symptoms are the same as my last relapse I would need to be seen by a neurologist at the hospital on Wednesday. This is to decide if its a relapse or a flare up of old symptoms. I don’t understand why this difference is important. Whatever it is is making me unable to work/ leave the house etc.

Meanwhile my symptoms are getting worse, I’m feeling more unwell and anxious. I thought it was better to get steroids asap rather than waiting for it to worsen?

I really hoped I could get oral steroids from my doctor and be able to stay at home. The thought of travelling all that way and maybe having a stay in hospital isn’t feeling great at the moment as part of my MS experience is being really sensitive to everything and hospitals are the opposite of calm for me.

Anyone got any thoughts on this? I’m considering calling my doctors and asking them to request the steroid tablets from the hospital for me

Anyone have any thoughts or advice on this? I feel confused by it all again… every single time it happens haha

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stumbler
2 weeks ago

@amylee , there’s a lot of information regarding relapses here :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

This may answer some of your questions and explain the Nurse’s reaction.

Try and switch off now. Put your feet up and have a leisurely weekend. Getting stressed will only make everything worse.


amylee
2 weeks ago

@stumbler I’m going to try my best to! I am being cooked for and have my feet up telling myself to just go with the flow of this. But then will have a sudden panic like I should be DOING SOMETHING! I suppose all I really need to be doing is ignoring that urge to try fix it. Ahhh I will switch off for the night 🙂


grandma
2 weeks ago

Hi @amylee, old codger here. You should have no problem getting oral steroids from your gp. I keep some ‘in stick’ and it proved useful earlier this north. Started relapsing, I’ve had the beast for 25 years and relapsing 2/3 times a year so work it out yourself, I have had 50-75 ‘exacerbation in that time I know my ms better than the junior doctors in A&E, long story shortI discharged myself after 12 hours and caught a taxi hone and starred oral steroids straight away. I lose my sight when Inrelapse unless I get intravenous steroids straight away, Hec


seanachai
2 weeks ago

Hi @amylee

I like all the others know how you feel; I feel for the MS nurses as they are trying to strike a balance between old pseudo symptoms vs a new real relapse..

I probably go against the grain here, but for one you know your body, two the risks are two high, if you want treatment or feel its a real relapse with potential consequences then scream your head off and insist on treatment, go to A&E if you have to…. but also remember it might just be pseudo symptoms, it takes time to recognise the difference and to be honest I am not sure you can always be right…

Its unclear how long steroids can continue to work, but they certainly do work at the outset and can prevent long lasting damage….

sorry, for giving all the options, but I personally don’t trust the professional community either because of finances or simple incompetence so I air on the side of caution and scream and shout to get treatment.. unlike the professional community, you don’t get a second bite at the cherry sadly…

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