As title says I’m seeing consultant next week and could do with some advice please from you lovely people if that’s ok. I’ve read loads of posts on here and you all seem so kind and helpful sharing your experiences.
In a nutshell was diagnosed 10 years ago when I was 40 and up to last summer had only had one relapse so guess I was lucky as the relapse was a good 8 years ago.
Moved here (Norfolk) from Surrey 4 years ago and didn’t register with anybody up here to do with MS as to be honest I didn’t think about it (big mistake, lesson learned!!)
Anyway had an appointment with GP last August who made a referral to NNUH where in October I had an MRI scan and saw a registrar. By the time I saw him I could only walk a dozen paces before I had to stop. He looked at scan and was surprised at how poor my mobility was after looking at the scan. Anyway he prescribed a 5 day course is steroids (500mg per day) which got me a bit more mobile. However I didn’t really improve much more and now I’m back to barely being able to walk again.
Have seen the MS nurse who has said it is a time thing which I do know but surely I should not be going backwards again?? I have a continence advisor I see regularly and saw a physiotherapist once who gave me an exercise sheet but nothing is really doing the trick. I’ve googled til I’m blue in the face and unfortunately seem to have a lot of the symptoms - probably because I’ve got away Scott free for so long!!!
Symptoms I have are urgency when needing to go to the loo, totally numb from the waist down and when I walk its like my legs have got lead weights on them (bizarrely it’s worse when I put shoes on), fingers are numb too and I’m getting the infamous MS hug too intermittently. On a good day I can walk up the stairs without too much trouble, on a bad day I have to haul myself up and my feet bang on every step on the way!!!
Now I can put up with most of it but I really need to try and get a bit mobile again as I rarely leave the house and that is getting me down. Luckily I work from home so have no travelling to do else I would be doomed.
When I was in Surrey and saw the consultant he said if I ever needed drugs it would not be a problem even though they are expensive. I don’t know how the land lies here with drugs and budgets.
Anyway, sorry for the long post but what I really wanted to ask was should I be asking for some sort of medication to try and sort me out?? Home life isn’t fab to be honest and my husband seems to think they can give me something and all will be sorted. Now I know it doesn’t work like that and I may or may not get better but should I at least be asking them to try me on stuff?? To be honest I don’t have much confidence if I see the registrar as last time he poked the bottom of my feet with a pin and I was trying to to explain that although my feet are numb I could feel it. Shouldn’t I see a consultant at least at the beginning?
Would you push for something if you were me (I’m not a very pushy person to be honest and just tend to say oh ok!)
Once again thanks for any advice or tbought you may have and sorry the post is so long.