Can anyone tell me is there a Secondary Progressive Forum? I haven’t been on here for ages and things have really changed!! I’ve been plodding along for the last year and all of a sudden these last couple of weeks, I’ve taken a real nose dive. My walking has got awful along with balance etc. I was wondering if others experienced this at all? I was only DX 3 years ago and still find it hard to comprehend at times!!
There is not, and never has been a secondary progressive forum, that I know of.
Have you actually been told you are now secondary progressive?
If not, what leads you to think so? Very dramatic deterioration in the space of a couple of weeks sounds more suggestive of a relapse to me, or possibly an infection or something, causing a pseudo-relapse.
The trouble is that many of us are somewhere on the continuum between RR and SP, really unaware which we are. You could be SP with or without relapses. You might be clearly RR but have such bad nerve damage that many of the issues affecting SP apply. I put it to the nurse at my Tecfidera clinic appointment that when my neurologist said he thought I was ‘essentially relapsing remitting’, it might mean that he wasn’t sure if I was SP or RR. This way I qualify for DMDs that might be of value. The nurse said it ‘sounded like the kind of thing the doctor would do’. So I’m on the edge of both I think, maybe having the potential for more relapses, but meanwhile getting more & more disabled.
So there’s no forum especially for SPMS. It’s all a free for all on here!!
And with regard to your finding it hard to comprehend, I’ve has the dreadful thing for 18 years and still find myself questioning it. Kind of ‘how is this possible’. People say they’re struggling to ‘come to terms’ with a recent diagnosis, well I don’t know if I’ll ever come to terms with it. I still have moments when I loudly bemoan it, complain that it’s not fair and demand another go at able bodied life. I’m sure a second go round would see me a bit more grateful!!
Sarah, I am new to this site and the forums but do not know of any SPMS page. In my experience any dramatic changes were indicative of a relapse in RRMS. I was diagnosed with SPMS about a year after a slow decline started, it was only after the diagnosis that I looked back and realised when the changes started. My initial RRMS was diagnosed in 1991 and I can not get my head around it properly and I still make monster sized mistakes.I hope you feel a bit better soon, if not chase your neurologist for a diagnosis so that you can choose the best course of action. I am currently in a trial for Tysabri to see if it can be effective in slowing the decline in 2ndary progressive MS.
All the best Mick
I was dx SP 7 years ago or possible PPMS, 3 years later I was up dancing at my daughters 30th birthday no problem but within 3 months footdrop bad mobility and bad balance set in. I have just managed to get my head round it although have a meltdown now and again. Left hand is going now. I have came to the conclusion the best I can look for is something to halt progression.
Have you been dx SP? If so don’t beat yourself up about it as it takes a while to get your head round it.
I feel just as confused as you do. I have had MS for 30 years, since I was at school and though I was first told that I had RR, I seem to have got worse, but my Con. Neuro. says that he doesn’t know if I have RR or SP, so what hope do I have, I’ve only got ‘O’ level biology!! I suspect that I have got SP, but who knows.
Hi, thanks for the comments. Yes I have been dx’d with Secondary. I saw neurologist last Monday who has said that although I’m progressive he’s 99.9 % sure I’m having a relapse! He’s organised an MRI as he doesn’t want to put me straight onto steroids because of my kidneys, so wants MRI to confirm his suspicions then he’ll decide on way forward. As I couldn’t get appt before 13/11, I’m going to ring them tomorrow and see if there’s any cancellations. My leg is gradually getting worse as today I can hardly walk. My left knee has decided it doesn’t want to bend as I’m walking!!!