Secondary Progressive MS - what happens now?

[Katie345]

Hi everyone! I haven’t been on here for quite a while, but I have a new question to ask - what happens next???

I was diagnosed with SPMS age 58 and I have gone from feeling unstable and tingly in my legs to using a rollator to walk over the last 7 years. I have regular 6 monthly telephone calls from a MS Nurse, but because I haven’t actually seen anyone in Neurology, is this it now - no future appointments? When I asked the nurse about this she said because there was nothing else they could do, there would be no need to see me and I wouldn’t need any future scans, etc. I could of course phone her if I had any MS related questions at any time, but I was advised to go to my GP regarding any bladder/bowel issues or similar should I have any concerns. I don’t take medication for MS by the way.

I moved to live nearer my son last year, but as yet still haven’t been assessed by the council for ramps to enable access in and out of my bungalow. I’ve chased this up and have at least another 6 months wait, so I shall have to purchase some myself I think now as I’ve been unable to escape to even empty my rubbish bins by myself! I have to rely on my son to help me out to his car should I need to go out.

What has this got to do with it all lol?! Well I suppose I’m stuck indoors in a new area (I have met my neighbours by the way - they popped round to see me!) and feel a little isolated by society and the medical profession too. I’m not depressed and always have a cup half full, but where does it go from here?!!!

I’m considering a mobility scooter, but I need the ramps and I know I can’t walk if I got off it, so need to discover where to go on one, although down the road would be fine just for some fresh air I suppose! I do miss the countryside though and village life and sometimes doubt my recent house move.

Please let me know if you are or were in a similar position to me and how you cope now. I do appreciate that I have had a healthy active life up to age 58 and many of you have had many more years with MS and suffered these problems much younger than me. I often have this pointed out to me, but I am well aware of it and really do wish I’d appreciated the country walks and family holidays much more than I did at the time.

Thank you for reading today’s ramble!

Katie

[mazmiller111]

Hi i have secondary progressive also.like you ive been told it’s down hill from hear, no meds & nothing can fix me. I live in a bungalow there is no help as waiting times are ridiculous. MS seems to be every where. I do keep asking my gp & my MS nurse but it is so slow my GP is better. I have a scooter but rarely go out on it as people bore me with inane questions not having. a clue what we go through. Local groups can provide volenteer car drivers for a cost but it does give you independence. Keep on at your gp, get advice off here. We are all ages I’m 63 but all know howit can be a struggle. You may get advice on the forum or speak to the team. Good luck I’m pleased ive lived, travelled had had a great time maybe it’s time to slow down.