Last reply 6 days ago
Severe Relapse

Morning everyone,

I was just wondering if anyone could help? I was admitted to hospital as an emergency last Saturday Night. They believe this is a MS relapse, but they won’t do an MRI until May to confirm (go figure!)

However, to cut a long story short. I was recovering from my last relapse (1 month ago) when this has happened. Last month I was able to walk short distances with two crutches,

I am now in hospital and unable to walk at all. I can stand for a few seconds and I have my upper body strength, but all the strength and function from my legs have all but gone. Left is very bad, right is bad.

I am being referred to the neuro rehabilitation centre when there is a space available. If anyone can help me understand what has happened that would be great. I feel the docs are a bit blasé about the emotional impact.

Thanks!

S

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
1 week ago

@enxsjp , I’m so sorry that you’ve had this turn of events.

I would hope that the hospital has performed the basic blood/urine tests, to rule out a run-of-the-mill infection causing a “pseudo-exacerbation”.

Were you given high dosage steroids for your last relapse? This would be the normal treatment for a life-impacting relapse, to bring it to a quick conclusion. Although, steroids should be limited to twice or three times a year.

Also, as it may be that you have highly active MS, you may want to think about the need to adopt an efficacious Disease Modifying Therapy (DMT)………..


grandma
1 week ago

Hi @enxsjp you are going through it at the moment. What is a huge change for you is everyday for them so you have to understand they don’t actually see things the same way as you. They are probably trying their best but between junior doctors who have to ‘report back’ to a consultant, who you will be lucky to see and nurses who can only ‘do what they’re told’ you are in the middle. You can only sit back and not stress cos that won’t do your ms any good! It’s a horrible situation, I’ve had the beast for 25 years, relapse a couple of times a year, have had endless problems with the NHS, I know when I’m relapsing, have sat for hours in A&E, but unfortunately we are all so different, and very unlikely to die, so we get pushed back all the time. Be grateful for the fact that you have already been admitted and are under somebody’s care. Things do not happen quickly with ms. Have they given you steroids? If they treated you with them a month ago they understandably won’t give them again. Too big a subject to give a quick answer to, but we’re always here for a moan, rant, celebration, and if you have a specific question, someone here will have an answer. Good Luck👂🙏🏻🤞😜


wjgregg
1 week ago

Dear @enxsjp,

I suspect you have come up against the dreaded “end of the financial year”. It happened to me many years ago when, in the January of that year, when I went to hospital with complete right-sided paralysis, I was told that I had had a stroke (I hadn’t as it happens) and that I needed an M.R.I. scan. Unfortunately, as they had “run out of money” they could do nothing until the new financial year…

We, as sufferers, understand fully the emotional impact. You have a massive community on here that are all rooting for you. Rant away, if that helps.

You will get treatment and, with grit and determination, you will improve.

All the best, with positive thoughts for you.

Jon


enxsjp
1 week ago

Hi Everyone,

I have had steroids as apparently my body was wrecked when I arrived. I wasn’t awake nor could I talk. So MP via IV for 5 days. I’m still pretty poorly and achy. Thrououghly fed up of MS and trying to stay positive. It’s so hard though.

I’m on Tecfidera at the moment so I imagine we will be having a discussion re treatment after this. My hubby is bringing the wheelchair so at least I may be able to use the bathroom on my own.

I’m sorry this is all so alien to me at the moment. I was just getting adjusted to MS after a bit of a bumpy ride and now 🤷🏼‍♀️

I really hope everyone is OK. I guess I just have to wait and see what happens and wait for further treatment.

Thank you all!


grandma
1 week ago

Hi @enxsjp how are you this evening? Has hubby arrived with the wheelchair so you can go to the loo? Am amazed that the hospital haven’t provided this.


enxsjp
1 week ago

Hi @grandma. I am not doing too bad. Still cannot walk or go to the toilet without help, but facing it I think – who knows.

My lovely husband did bring a wheelchair and feels a little odd if I am honest. I’m sure I will get used to all this in time, but at the moment, this seems a little overwhelming.

I hope everyone is OK and thank you all for your help while I navigate the latest turning 💪


mermaidia11
1 week ago

It sounds like like u r having an awful time!!
I can’t imagine how challenging this is for you, and so sudden -…but it sounds like team @enxsjp are pulling together though? Glad u have your hubby for support – like a teabag, we only realise how strong we are, when we are in hot water eh?!

Definitely an exacerbation/relapse chick and definitely an emotional sledgehammer to boot – but OMG you will be more euphoric ‘than a smack head after a fix’ when you get back on your feet ! It’s almost worth it trust me…!
And u will and you have to believe that – (Like have to)

I’ve been where you are when an antibiotic resistant uti got out of hand…it was hideous and I felt like an alien? Like OMG am I talking clanger…I can’t fcukin walk here?! (I can now btw)…I had to have a commode …u should too chick, you don’t get points for bravery and u r having a relapse so just suck it up and make it easier for yourself and safer in the short term?

And as for having such a severe relapse after you have had this mythical medical ‘insurance policy dmd’ against such an occurrence – that must be v hard

They spend a lot of time talking about taking the dmds, but not the actual basics of the disease?!

Sclerosis is Latin for scar – which needs time to form – because the lesion is just that, a remnant left after the relapse. It doesn’t show up until after the event. So there wouldn’t be any point in scanning you now, the scar has to form ? Why t fcuk havnt they explained this to you ?! It’s basic neurology and behaviour of ms.

(I’d be interested to see the severity of a relapse after or during taking a dmd, as opposed to without. (But thats a debate for another day….)

What’s important now is that you let everything go for now, appreciate the time in bed and worry about everything and everyone else another day. It’s all about u girlfriend

You’re only job is to get over this yak time and know that things will get better
Take care ( especially with falls – I’ve rug munched many a time pulling me Knickers on with no balance or strength!) and let us know how u get on

Sending healing sparkles ✨♥️🍀☮️🌈✨


enxsjp
6 days ago

Hi @mermaidia11 thank you for your post it really helps to hear from other people who have gone through something similar – I know this is hard as MS effects everyone so differently.

I think I am doing OK. Obviously still bed bound mainly due to vertigo and lack of training on the wheelchair, but I’m OK. The vertigo has come back with a vengeance after being kept at bay via steroids I think. We will know more when I have a place at rehabilitation I think. At. The moment it’s a very much “wait and see” plan.

Thank again everyone and if anyone can recommend any box sets/podcasts that would be fab! ⭐️

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.