Newly diagnosed after 13yrs! Help/advice with steroids plz

Hi all Hope you are all well and coping. Well, today was a turning point ! After 13 yrs they’ve decided to diagnose me with ms. To make it clear I’m (on a spectrum level) mild, still not been told what type as being ref to specialist, specialist nurse ect. But they would like me to have steroids now, after 4 relapses this will be the first time I will have had them. I have to go over 3 days, each have an intravenous steroid. Please can anyone give me any advice experiences about this ? Kind of nervous but looking fwd to not having the symptoms so bad!!!. Also does any one have “bakers cysts” or experience of arthritis caused by ms?. Many thanks in advance Lisa X

Hello Lisa, I’m afraid I can’t help you regarding intravenous steroids as I have only ever taken oral steroids but I’m sure someone can tell you more. So far as arthritis and ms, yes they are connected, I have Ankylosing Spondylosing and Lupus all types of arthritis as they are all autoimmune diseases. Hope this helps. Janet x

Thanks Janet X

Hi Lisa, I just googled bakers cyst…a swelling behind the knee, filled with stuff that should be inside the knee…can be due to oesteoarthritis…have a google to read more about it…it can go away on it`s own.

13 years to get a diagnosis! Wow! I can identify with you, as it`s been 16 years for me…in and out of diagnosis and still not got a definite one!

I spent a few days in hospital having iv steroids, a few years ago. t didnt help, as I didnt have PPMS, like they said I had!

Many folk do respond well to steroids, so I hope you do too hun.

luv Pollx

Hi Everyone, I’ve just been diagnosed with progressive MS after many years. Previously told I have osteoathritis. Had to give up work a few months ago. Took 500mg of steroids for 5 days. They helped the pain but not the walking. Now on 600mg of gabapentin and baclofen. Feel very lightheaded. Would love to hear from people coping with mobility problems.

Lynn

  • hi lisa I got told i had ms 18 years ago then a doctor said no you have me my world fell apart now 6 years later they said no you do have ms .I can not do this any more i cannot walk very well now .so 13 years i know what its like