so the last couple of weeks i have been going down hill, just finished my second course of steroids in 4 weeks and worried that when they wear off i’m gonna go down hill even further so selfishly feeling really sorry for myself!!! Still waitng on hearing when i’m gonna get treatment, no MS nurse to talk to so i guess my Dr is just gonna have to put up with me irritatating him .
Just feeling rubbish and on my own a bit right now, my hubby is awesome but works all day and is shattered when he gets in but he does try and help out with the getting dinner and the kids sorted
Yes I feel the same just started on a course of oral steroids to try and get my leg working (should have started a new job on Monday but had to call in sick, god knows what they must think) like you I’m concerned that the benefit I hope to get from the steroids will wear off once the course is finished and i start to go downhill. I got an MS nurse allocated to me yesterday only by phoning the hospital and asking to speak to a nurse in the relapse clinic, she was a godsend and faxed my GP to get a steroid prescription. Try phoning the hospital where your specialist is based and asking to speak to an MS nurse. Good luck.
Thanks Louiec, unfortunately the ms nurse retired and hasnt been replaced so gonna have to travel about 20 miles to see one if i’m even able to!!!
your new emplyers should be understanding ( hopefully)
Will keep fingers crossed that neither of goes downhill and just stay stable!!! ( not gonna be taking steroids again if i do go downhill as its not worth it!)
hope u dont mind me butting in and asking a question…
u say ‘when steroids wear off’-how long does that take? i had them (against my better judgement) 5 weeks ago. had bowel accidents on 4 of the 5 days i was taking them cos coulndt see and molilise too loo quick ewnough. am only sleeping 4/5 hourds a night. they havent made any difference to eyesight prob. i slept 10pm-8am (up for loo only) plus 2 hours in afternooon prior to taking them.