After thinking things thru, I emailed my MS nurse to update her, as when I saw her a few weeks ago she told me to let her know if things didn’t improve after the antibiotics had had a chance to clear the UTI I had. Basically I feel like, and think, I might be relapsing. Lots of stuff seems to have got worse and the numbish finger/thumb thing is the whole hand, and I’ve almost keeled backwards a few times and have proper room spinning moments and this has all been in the last month or so.
Nurse spoke with a consultant (not even my one as he wasn’t around) and I’m on day 2 of 500mg of Medron again for five days, so crossing my fingers and toes now! I’m not the expert but I think I might have mild RRMS and SPMS is what kicked in and brought about Dx. When I met with my MS nurse she did say the chances are, with the way things happened for me, that I probably have had MS for a long time - the funny thing is that the more I’ve thought about things, I had the odd weird happenings probably about 10-12 years ago, at least 10 anyway. Being naturally quite clumsy, I think I dismissed a lot of silly things i.e. the weird kicking off flip-flops etc. and not really comprehending why
So I’ve been trying to ignore the steroid jittery feelings and am taking it really easy this weekend, so I may feel a little less sore after the course this time. Weirdly, 2 days of steroids and I can walk up the stairs and tap my right toes on each step but don’t have to literally scrape my whole foot on every step.
Thanks Pam, I really do think now that i was lurking around the corner for quite a long time and I missed the signs.
I was a bit of a sickly wuss, so when I hit the fitness thing and got strong, I found that addictive as everything seemed to settle into place. My migraines disappeared, my periods became regular and I felt good, colds and stuff didn’t really dent me - who knew my immune system was on the blink?!
I read some where that there is a school of thought that there is no such PPMS just infact benign or mild RRMS which only gets take seriously when in develops into the progressive stage of SPMS. This would make sense since the age on onset between SPMS and PPMS tends to be the same.
It is probably important to get this DX as there seem to be more trials for SPMS.
On another note I am finding gabapentine gives me more relief from the spasticity. I am on 400mg 3 times a day. Plus 30mg of the baclofen.
Thanks Moyna, that does seem to make so much sense to me. And yes, so many more choices with SPMS.
Generally I know I’m getting worse with my walking but there’s the other stuff that does seem to come and go. Even the L’hermittes seems to go away for months at a time and it has never been anywhere near as bad as it was, when I was first diagnosed. It was awful back then, it used to go as far as my calves, now when it does appear, it really is the top of my back only.
Yes, I’m going to look into the gabapentine and also he mentioned a man-made cannabanoid, Nabilone, so I’m going to ask about that too.
Googled Nabilone…seems to be used mainly for people having chemo to help with sickness. Only found one site that mentioned it’s use for MS and chronic pain. Very interested to know more although I imagine it will be as difficult to obtain as Sativex. Good luck Sonia, Nina x
