MS - does anyone have any experience with Methylprednisolone via IV

[gailforce1]

After being sent to A&E by my GP it was decided that I am having a relapse 7years after diagnosis and no problems since. I was given 1gram of this steroid via a drip and have to go back today and tomorrow for 2 more doses.
I have been given no information about how long it will take to see any improvement or what continuing care will be. Does anyone have any experience of having this drug? I will try to ask today but am just going to a side ward to be given the drip and not seeing the consultant. TIA

Gailforce, you've got some great info from Toddler. I learnt lots from a good friend (we were mates pre MS) about what to take notice of and what not.

Her best advice was not to hang around on Internet forums during the day (!) as they were mostly the very poorliest who were often depressed and therefore not lifting. That sounds really harsh I know. However I have come across a lot of people who really do delight in their new illness and lifestyle and like to talk about how their neurologist has never seen an MRI scan as bad as theirs! You get the picture? I like my neurologist to know exactly what he's looking at and that he has definitely seen my issues before....

I called the MS society helpline in the early days and had a chat with a lovely understanding lady. Why not give them a call even if only for signposting? Their website is very good and straightforward too. Loads of info on drug treatments. I don't go to a group either for the same reasons as Toddler.. I want to carry on trying to work (doing part time due to fatigue) and not majoring on being ill. That said, I do have to stop often and realise that I am ill which almost shocks me coz I'm trying to get on with stuff when I feel good.

Take it easy with your house sitting. Can someone walk the dogs or do they not need huge long walks? I would let the homeowners know, sure you have already.

How's your mood? Do you have any brain fog? Weird term but that's what I have had with relapses, bit zombie like and still returns when I'm fatigued.

Seaview I could not agree more with you! People are amazed when I just do things as much as usual, I still work full time as a paediatric nurse. It is hard going ( I am it allowed to use crutches on the ward) but work are amazing. People are very keen that I should reduce my hours and go to short shifts but I always refuse as I'm still fairly well with it, and it's too early. I don't think my MS has been a completely bad thing in some ways I think I'm a stronger and better person because of it.

Toddler, that's great you manage full time hours. In awe. Of course you should do what we you want and are able to do. My fatigue is still a killer after a big relapse (my first proper) this time last year.

I don't like talking too much about MS outside family and trusted mates. It works for me and I don't get funny remarks about what I should be doing or not doing. I also sense that some people at work think I'm milking my situation. That's their view, means nothing.

Love the fact that there's a thread under Life Limiting illnesses....not.

Chin up OP, mindset is a big factor here. Perhaps also have a look at the swank diet (really nice and properly helpful FB page even if just for the files part) and vitamin D supplements for a gentle start if you want to self help.

And.....I agree it's not been all bad. I have slowed down, enjoying the garden, slow walks, time at home, made me appreciate loads of things and make time for real friends.

Actually the worst thing for me is other people's reaction when they ask why I am on crutches or limping badly. Ranging from 'oh that's terrible' to dropped jaws and one lady I barely knew bursting into tears. She was so upset I thought she'd just been diagnosed. I was not impressed with that!!

Oh no, hard to handle! I guess they think you'll 'end up in a wheelchair'.

A lot of people I speak to either ignore it as they're probably too afraid or they play it down and suggest I get a sun lamp for the winter months (weirdest one) or something. Guess it's all well meant. I generally change the subject pretty quick and ask about their holidays or job and off we go.

I really can't stand the posts online that are written as if MS sufferers are saying to people "you don't know how I feel", "don't tell me to just rest" etc and they're quite aggressive. Reality is that I don't really want anyone to have MS. It's a bit rubbish at the worst times. But there we are....

It's been lovely to sound off a bit on here today. Great to talk to you Toddler, you sound very grounded. I wish you all well. OP, please take it steady and give yourself time to get better. Please PM me if ever you want to. I only use my phone but I'm sure I'll get a notification.

I've quite liked this thread as well. Great to have a moan sometimes. Good luck both of you and please PM me as well. If you want.

Is there a reason why we can't keep up with this thread? Don't know, maybe watch it? Contribute as and when you need to vent a little.

Gailforce and Red Priest?

Gailforce, please let us know you're ok?

Good idea.

Today I have managed to speak to the MS Nurse. She said that the steroids would probably take 6 weeks to have any effect and that if I contacted my GP I could ask for a referral to her. However, she only works part time and her colleague has just left and they are trying to recruit for the post so there may be a long wait. However, there will be a longer wait should I ask to see a consultant - a year.
I am going to contact my GP tomorrow and ask for both referrals and then wait to see what dates come through.

I am just wondering about arranging some private physio so that I could be given some exercises to do as I am afraid of losing muscle tone.

That length of time to wait is not acceptable. Can you do your GP to refer you to another hospital. When I originally went to my GP to ask for a referral to a neurologist I was given the choice of two hospitals. One had a two week wait and one with a six week wait. I went for the 6 weeks as the other hospitalist crap. My MS was picked up on a research scan as a healthy volunteer so I thought the chances of it actually being MS were very slim so wasn't bothered about the wait.

I never even thought of looking under life limiting illness... Never see it that way at all.
I'm on Tecfidera tablets if anyone's intetested. Better then injecting interferon anyway!

That is too long to wait, I agree.
Obviously you are hoping to recover and be well but worst case you could have a number of relapses in 12 months with lasting damage. GPs don't really get the illness, not their fault, but as Toddler said the current thinking is to treat early with DMTs to avoid disability.
I would definitely ask to be referred to
you nearest big city hospital (eg Birmingham QE, Bristol etc, think big wherever you are) as you need help. This could include some Neuro physio which I had after my relapse on the NHS.

It does seem a little like you've had your steroids then been sent home without much back up. So sorry if that is true. I had the same thing, waiting months for a consultant who I eventually saw and he was not a MS expert so was only to refer me to DMT clinic. The physio was all I had. I eventually referred myself to the MS nurse as no one else had.

That all sounds very doom and gloom, I do apologise. You're on the right track. You need to rest too, that'll help you recover.