Forum

Newly diagnosed and steroid infusion

Hey, I’ve been diagnosed this week with ms, it’s been under investigation since 2008 but with several problems due to tests either mis informed or results going missing its taken time. This relapse I’ve lost complete vision in my right eye and the MRI showed it definitely is ms. I’ve just been discharged from hospital after a week. During my stay I’ve had a 5 day steroid infusion. As I’m newly diagnosed nothing as yet has been explained. I was told the steroids will help speed up the return of my eye sight. But all I’m feeling is pain. I found the drip session excruciating. My arms felt like they were giving birth! I was having palpitations etc etc. now my whole body hurts, I feel like I’ve been beaten up with a baseball bat. I feel bruised all over. I have prickles in my fingers and my skin at points feel like its blistering and burning off. My throat is sore and have a really sensitive gag reflex all of a sudden. I’m shattered n painful all over, even lifting a knife and fork requires a great amount of pain and effort! Really I guess I’m asking is is this normal? I don’t really understand what’s going on yet, it was kinda you’ve got ms, here’s some steroids then I was discharged.

Hello and welcome,

Sorry to hear of your dx but am afraid I cannot help with regards to iv steroids as I’ve only ever taken oral steroids. I’m sure someone who does know will come along and help you. So sorry you are in so much pain and hope it goes quickly in the mean time sending (((((HUGS))))

Janet

x

Hello madmadge,you’ve had a busy week.Five years to get a diagnosis is taking the IS,so the 'Roids are well overdue.We all react differently to them and I don’t think what you’re experiencing is that unusual.All I can say is that it will get better and you should get some improvement with your eye.

When you feel a bit better don’t be surprised if you’re hoovering at 04.00 'o’clock and thinking about defrosting the oven or something.If this is your first time on here,welcome aboard our ‘Internet Lifeboat’ and the bleach is at the stern.

Good Luck,

Wb x

Hello Madmadge,

Firstly welcome you’ll get lots of advice and support from this site. Secondly I’m sorry you have to be here as an MS diagnosis is difficult but at least you now know exactly what is wrong with you and that really does help. IV Steroids affect poeple differently and what you are describing is within the range of their impact (I had a severe itchy rash all over my body after my infussion).

Once the steroids start to kick in more things should improve for you and the pain should ease. I am somewhat surprised they discharged you from hospital so quickly and wonder if they have offered you any support in coping in your home? Have you been allocated an MS nurse as she would be able to support you? Did an OT assess you? Have you been informed of Disability Living Allowance (soon to be PIP) to help you live with this condition? It is remiss of the hospital to simply discharge you without putting systems into place about how you can continue to function within your home environment.

I hope your symptoms pass quickly,

((((((((((((((((((((Hugs))))))))))))))))))) Mary

Thanks people, well I’ve had a letter through to see the ms nurse in may, but between now n then I’ve got to resist google! My steroids finished on Wednesday and I was told as soon as the cannula was out I could leave, so that was it. I couldn’t find anyone to make sure I could just go, but 3 nurses had told me I could because I’d asked every time a nurse came and checked on me lol. Who is the OT? I literally was told by the neurologist on the ward round that I have ms, that was it, no discussion or chat about it. He’s a busy guy I guess. Luckily there are places like this to help put people’s mind at ease! Ooh and my house could do with a good clean so hopefully that buzz will come soon! (I’ve been in hospital for a week which means the husband and dogs have been home alone so I’m sure you can imagine!)

I thought things had changed for the better – seems not!

When I was diagnosed 17 years ago I had a weeks stay in hospital for a steroid infusion. Nobody would believe that the cannula hurt but I was ready to rip it out of my arm. Nobody talked to me about my diagnosis in fact the neuro told me to go away and live a healthy life!!!
I spent 10 years or so getting on with things on my own until I got a new GP who urged me to get back in the system. Now Leeds has an integrated service with specialist neuros, MS nurses physios etc and it seems much improved. I’m sorry that your area is still in the dark ages.

No matter, you have found this site. The MS Society has lots of info and the people on this forum are a priceless support system. You can come here for help or just to moan and know that someone will be able to help or sympathise. It will take you months to come to terms with your diagnosis so don’t worry about feeling in the dark.

Jane

[quote=“madmadge”] Who is the OT?

Ooh and my house could do with a good clean so hopefully that buzz will come soon! (I’ve been in hospital for a week which means the husband and dogs have been home alone so I’m sure you can imagine!) [/quote]

Occupational Therapist. They can help a person to find workarounds if MS problems make everyday things at home or work more difficult than usual.

Ignore the dust and dog hairs. They’ll wait. You have been having a horrible time and all kinds of assaults on your system, and what you need to do now is to be kind to yourself and give those steroids a chance to do their stuff. They will be working hard - that’s their job. Yours is to help yourself heal by taking it easy and letting your mind calm itself.

It is a temptation, as soon as you are feeling a bit better, to roll your sleeves up and get stuck in, making up for lost time. Please try not to do this. The steroids can indeed give an artificial energy buzz, but if you mistake it for the real thing, you’ll exhaust yourself. Take it slowly and give yourself time to get better gradually. It will be such a lovely feeling when you do - just hold on to that thought.

Alison

x

Thank you so much peeps, you’ve been a great help! I was told not to google and go searching the Internet until I’d spoken to my ms nurse, but I wouldn’t of managed the past few without the kind words of “experienced” people. :relaxed: This thing is gonna take some getting used to, but I can see that with sites like this there are always people there to help pick you up when your feeling a tad low. Your awesome