Hi all, I am bristling slightly from the posts I keep reading from RRMSers who are so glad they don’t have PPMS and who are so sorry for us. Aren’t we all in this together? Is it far worse to be dx with PPMS than RRMS? Isn’t this illness individual to everyone and how bad it is depends on the individual? Or am I just kidding myself? Anyway, just wanted to get that off my chest, Yours grumpily, Teresa xx
Hi Teresa, I seem to have missed the posts… but yes would annoy me too. Don’t they think that us PPMSers read EL posts? Very insensitive of them.
And no, you are not kidding yourself. MS is different for all of us… I don’t think one type is worse than another except I suppose that there are no drug treatments for us (well except for pain) but any of the types can be mild or aggressive… or more likely somewhere in the middle.
Not worth letting it get you down though. Stick with our elite little gang…
Hope you’re doing ok. I’m in bed. Fatigue fatigue fatigue… and buzzing buzzing buzzing… and won’t bore you with it all…
Pat x
Hi Pat Thanks, your post has made me feel a bit better. Feeling rather crap myself - legs not working, keep falling asleep, teenagers moaning when I ask for help…Still we keep on keeping on, don’t we? Teresa xx
Hi Teresa,
As you know - i have RRMS and we have spoken often.
We are all in this together - i think it is perhaps that some people are a little ignorant about PPMS as it is not as common as RRMS and the treatments on offer are mainly for RRMS.
I must admit to being a bit ignorant myself at first as i know someone with PPMS and she is affected badly by it.
But - now i have been on this forum and met people like yourself and Pat - i realise that you are in the same position as me. We have the same condition and it will affect us all differently.
The relapses can be horrific but so can a progression of symptoms.
Someone who has active RRMS could be affected more than someone with slow progression of PPMS.
At the end of the day we all have ms and should be supporting eachother - not feeling sorry for someone with a different type.
I feel sorry for ALL OF US with this awful condition.
Sending you ((hugs))
I hope you are o.k?
I’ve never heard you grumpy before!! LOL!!!
Teresa. xxx
Thanks Teresa, I agree we all need to support each other. I think, as you say, that people are ignorant about PPMS and often a relapse in an RRMSer seems to make them much poorlier than I ever am. Yes, I am rather grumpy atm, I think the whole MS thing is really getting to me right now. Hope you’re not too bad Teresa? Teresa xx
I’m not much better TBH! And no i’ve not been to the Gp yet! LOL!
Don’t tell me off! I know i need to go but i hate them soooo much. I always come out feeling worse.
Hope you are ok on the LDN?
I always withdraw when i’m not feeling good and just want to hide away by myself - so thats what i’m doing! won’t be able to get away with it now the kids have broken up though.
I’m feeling a bit grumpy myself atm. I have a housefull of kids tonight and i can’t be bothered! LOL!
Our house is like the local youth club!!!
Teresa. x
Not feeling very good at all atm, think it may be the LDN. Had to lower my dose as I was retaining urine so badly, I could hardly pee. Hope my body gets used to it soon, otherwise I will have to come off it. I was hoping it would start to help my bladder, not make it worse LOL. Sorry, you’re still feeling so crap. I know you hate GPs but perhaps it’s time to bite the bullet! You’re so brave to have all those kids over. 4 of my own is enough for me! My youngest is really sad to have broken up as he has finished at his Infant School and will start at the Junior school in September. He was so happy at the Infant School, I think he is worried that he won’t enjoy the Junior school as much. He will, he’ll love it! Teresa xx
Hi, well you know, Ill let you in on summat I have often thought about posting, but havent just incase it upset anyone.
As you know i am very PPMS like and I sometimes wonder if it might be better than having RRMS. Hope no-ones screaming at me for my admission! My reason for this is because my own journey has been on-going and with the knowledge that whatever Ive got, it won`t get better.
I think it must be really awful to have arranged a special occassion, only to have to cancel it when RR raises it`s ugly head after a period of feeling not so bad.
As I said, sorry if this has upset anyone.
luv Pollx