Like this ppms board !!

i like this board,better than the EL board,so was wondering if its ok to come on,more than the EL board,i dont have ppms,but i do have spms,i seem to have more in commen with the ppms people than i do the rrms people.

jaki xx

Hi Jaki… of course you are welcome on here!

We have a couple of other spms users… and as you say, the two conditions are very similar anyway.

In fact I read a blog a while back… I think it was one of those Barts blogs… saying that it’s possible that people with ppms may have had very mild rrms and then only realise something is wrong when it turns into spms… and get dx with ppms!

I am wondering if that happened to me… as I have had years of odd un-dx symptoms as far back as my 20’s (I’m now 60 and was dx with ppms at 55). I remember going to the GP when I was 22 complaining of dizzy spells and no cause was ever found… and many other unexplained symptoms over the years. So there you go… it’s possible that we all, or some of us anyway, are spms.

We are a nice little gang on here… and you are more than welcome to join us.

Pat x

Thanks for the welcome Pat,ive been observing for ages on here,but now i will join in too,thanks for the welcome.

i had very similar to you,i had years of unexplained things happening from the age of 14,but wasnt diagnosed until i was 32,with an rrms diagnosis,but i feel as though i was spms when i got the diagnosis,because i didnt seem to recover at all from the relpases i was having,so i do think i have been spms now for the last 21 years,i think the rr was from aged 14 to 32.

jaki xx

Welcome on board Jaki I have not been on to the other boards but I may do one day. I think we will let you pass the enterance exam but I recon a Gin and Tonic for us all should get you accepted ONLY trouble is it has to be a cyber one I cant find a smiley for a G&T so you drink it and tell us what it was like

I hope you are OK I am sitting here lookingout of the window at the rain, and wondering if the Indian Summer is a monsoon season? My sister in law is on holiday this week so am making mental note to not go away when she books her holidays. Cheers even if it is only a cyber toast and welcome. Don


G&T went down well,thank you

but i must tell you that i am a baileys, girl at heart, a large one with lots of ice !!!

jaki xx

Welcome to our “gang” of friends, I would say the more the merrier, but that seems the wrong phrase on this occasion!

Look forward to seeing your posts.

Pam x

thank you Pam

jaki xx

Hi jaki and welcome It is very friendly here and I’ve been very glad of the support here too. Oh… return still not working, doh! I think a little glass of red wine might be good about now, after all, it’s FRIDAY!!! Sonia x

Agree with you Jaki; all those RRMSers with their visual and/or speech problems…very, VERY, different to us lot. In terms of graphs, they’re like the financial markets over the past few years (lots of wild ups and downs), whereas we’re like one depicting the value of pensions over the same period: a gentle, but persistent, decline.

Hi Jaki

You’re right, this board is great. It’s been really helpful for me, everyone has different experiences and someone always seems to be able to answer those questions that you might not be able to ask anyone who hasn’t suffered whatever’s bothering you. They’re also wonderful people happy to share both your frustrations and jubilation. Welcome to the group.

Cath xx

Hello Jaki, I think that PPMS is the same as SPMS without the white knuckle ride of RRMS as the starter! I can’t say anything more than my own welcome, but if you like Bailey’s have you tried Amarula? It’s very very very dangerous! Best wishes, Steve x

Hi Steve,thanks for the welcome

lol,no i havent tried Amarula,suppose its very fattening too like baileys

jaki xx

Hi Jaki, I too have SPMS and the same as you I read this board and E L for ages before I posted a note. Also like you I quickly found I didn’t feel I had anything in common with the EL board. You’ll find it’s great on here…everyone is so kind, so welcoming and so knowledgeable. It’s made a tremendous difference to me to talk to people with the same problems that truly understand how you feel…no subject seems to be taboo and I really hope you gain as much as I have from the forum. Best wishes and welcome, Nina x

Thanks Nina.i just feel as though i belong more here


Hi Jaki, welcome to our merry bandM

Thanks M


Hi everyone I have was diagnosed with PPMS two months ago and just getting my head around it. Really want to reach out to other people with PPMS. I have probably had it for about 6 years and things are mostly manageable. Don’t think it has progressed much in the last couple of years, done lots of yoga and massage therapy. It’s mostly walking, though can do 20/30 minutes, fatigue, breathing and some bladder issues. Can it stay the same for long periods of time? Can I be the same in ten years? That’s the bit that petrifys me!

Hi Moid

I think it all depends on how aggressive it is… In my own mind, I kind of think there’s certain things I can handle but if it all happens too quick, I’m not sure how I’d cope.

I know my first real symptoms showed aroung July last year BUT if I think about it, I have had problems with flip-flops for at least 5 years i.e. I’d randomly kick off the righ foot one and find myself barefoot in the concrete, thinking aboout it now I guess that was the first sign, I just blamed an old injury.

Sorry, gotta go, skeeo is needed :slight_smile:

Sonia x

Ooops, that was supposed to say sleep, sorry!