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RR, PP, SP. who dicided??

How do you know if your pp or sp I seem to have all and more than people saying they are sp/pp I just don’t understand, Arrrrr. My nuro says I’m borderline? What the hell does that mean? Thanks.

hi squiffy

i dont know either.

i think i was obviously rrms as i was in the middle of a huge relapse at the time of my diagnosis.

it was terrifying because i hasnt got a clue why my legs wanted to go off in the wrong direction, why i kept dropping things and knocking things over. it was a relief in the end to be told it was ms.

hmmm if i’d known then what i know now…

i’m 6 years on from dx and seeng my ms specialist on monday.

i have a few new symptoms since last time i saw him.

now i’m in a quandary - do i tell him about the new symptoms and risk him telling me i’m now sp?

or do i just soldier on?

i’m hungover this morning - big style.

i won’t tell him that!!

carole x

I sometimes wonder if the experts are even sure.

My neurologist at first said primary progressive, then changed his mind and said secondary progressive, which by definition must mean I was once relapsing remitting, I suppose that must have been when my gp was telling me there was nothing wrong!

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they keep changing mine from rr to sp,they cant make their minds up,dont think they even know…

J x

the labelling brigade?

we are all unique-just like everyone else…

dont spend too much time on looking for an answer-do something u enjoy instead…

ellie

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I agree with Ellie, why worry about what it’s called, it’s MS and the doctors will treat it accordingly. Keep the neuros informed and they will then know what works for you and what doesn’t. If you don’t tell them what’s happening how will they know how to help you?

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The point is that, I understand DMDs are pointless to pp/sp so if they can’t be sure what we are why take a chance taking the drugs and injecting ourselfs if all it’s going to do is make us constipated or worse, I do tell my people everything, and I get ok we haven’t tried this yet have we?? To me it’s stupid, all very well saing do somthing you enjoy, I enjoy golf and dancing, but as I can’t stand for more that 5 mins or walk to the kitchen without crutches, all this in less than 2yrs, iv stopped taking all the meds, lets see if it makes any difference, I think most people are taking far to many meds, no wonder the phamasutical firms don’t want to find a cure, billions per year?? Belive it or not I’m not as miserable as I sound, lol (frustrated)

I’m PPMS SquiffyG. Neuro informed me last year and then sent me away…basicly said I’m on my own lol. Luckily with a good gp :slight_smile: I used to love dancing. Not what your talking about, just popping my favourite CDs on…miss that. Did have a slow smoochy sort of dance with my husband a couple of week ago in our room. If you call shuffling round in a circle dancing hehehe :slight_smile:

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Hi Noreen,

Good on you for making the effort. At 56 I have grown into a grumpy old woman.

Bye the way I was dx PPMS and then he decided no it was SPMS.

All I know is I just seem to get progressively worse with no remission.

Mags xx

Thanks Maggie but please don’t think I’m anywhere near as bad as SquiffyG or yourself by the sounds of things. I can get about with a walking stick for short distances and my husband’s help…I don’t know what I’d do without him…,best pop my clogs before him :slight_smile:

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hiya squiffyg

i dont recognise ur name-i guess u r fairly new to the boards-welcome!

i have been lurking around for many years now and would like to explain myself a tad better if i may try…

up until july 2012 i was working/driving/belly dancing bringing up my 4 kids on own-fairly ‘normal’ life…

then ‘bang’ a huge attack from which i have never recovered. i now have almost no power in right side, lost eyesight completely in left eye, doubly incontinent, speech probs, emotional lability, carers in to help with daily living.

i am not moaning! i just want to clarify that my answers are based on my new reality. replies are often short cos i struggle to focus on the screen for more than 10 mins and i reply using one finger. but i will spend the time and effort to reply if i can support anyone who is feeling angry/confused etc cos this is a cruel illness/disease and we all need support in some way or another.

what do i miss most? writing and knitting my baby hats… i dont miss housework! i do enjoy practising meditation.

am waffling now! am not saying my way is right-but it is right for me…labels are not important to me but i appreciate they help some (regarding treatment/medications perhaps) we all cope and deal with differently. i hope u find ur way-i really do.

ellie

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I agree with you we take drugs because we are desperate and hope to slow the progress. We have jobs, families, commitments, lives and are fearful so will grab at any small straw. The pharmaceutical companies just rake in the cash on the back of our helplessness. These drugs are not nice and it seems to me that bodies that are struggling don’t need to be combating side effects too. I do believe we each have to do what feels right for us and like you I take nothing but try to look after myself and eat as well as I can. No one knows what tomorrow holds disease or no disease. Trudie

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When my neuro diagnosed MS, he explained RR and PP and asked which I thought I have. I said PP and he agreed with me.

And Wilf, SquiffyG is right, knowing which type one has matters because it affects eligibility for DMDs - they are only available to people with RRMS. There is no treatment for PP or SP at present, people with progressive MS can only get treatment for symptoms.

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Thanks to everyone for your interaction, and blossom any dance is good, and I do belive in sexual healing. Unfortunately after 32yrs married its only 4 times a year, actually 3 times. On her birthday bed on her own is the treat. Lol. Chocorange, AKA (graham100) but still quit new. It’s getting cooler? Wonder if that will help??

I was dx back in 2004 with RRMS, although I was never sure this was correct because there were only 1 or 2 attacks that could be identified as relapses, and there were no periods which could be identified as remissions. In the main, the symptoms were ever-present. I started on Rebif, and was on it until 2010 when I stopped it because it was causing a negative reaction with my mobility on my injection days.

When looking back at the copy of letters sent between my neuro and my GP, back in 2007 they started to contain phrases mentioning a suspicion that I was developing a progressive form of MS. This suspicion continued until the last couple of years, where it more or less states that my MS is of a progressive form.

At my last review with my neuro last month, he decided that he was going to refer me to another doctor who specialised more with progressive MS as he admitted that he mainly dealt with RRMS, and that was where most of the drug treatment was at the moment.

Neil

They think I’ve got PPMS, personally I think it’s mild RRMS and SPMS and have even had a second course of steroids that still gave me some help, but they say PPMS anyway, I think sometimes it’s too close to call and they’ll hardly put me on a DMD when the outcome with PPMS might not be good Sonia x

Hello all. I personally have rrms and have been offered many dmd all the way through .to tysabri but i do not want them, so am basically on my own. When i saw the ms nurse the other day whos answer to all my questions was “well it might not be that bad or indeed at all if i was on drugs” she might be right, but when i said “i dont want to be on drugs for the rest of my life” she askef me what i actually knew about ms

Me-“well i thought i knew a bit but obviously not”

Nurse-“the drugs are not for the rest of your life just until you get spms”(said in a cheery positve way)

Me-well thats worse

Nurse-not necessarily,you do not have the good days and the bad days, you take away the not knowing what tomorrow will be

Me-every day is a bad day with no good days and its all just progressively down hill

Ok maybe spms is not that bad, but i dont see it as a selling point, or a good thing meaning the drugs are not for the rest of your life.

Not sure i’ll bother seeing her again.

Nyama Nyama

I was never offered dmd’s when I was RR but I would have hoped for a better response than that had I decided not to go down that route. It seems to me they are always warning people of the risks of taking these drugs, hence you have a choice take the risks or not. I would hope not everyone gets your response if they decide no to take the risk.

It begs the question that if they expect you to become SPMS even if you take the drugs how much faith do they have in the dmd’s they prescribe?

Well done you for making a decision about your condition and sticking to it, I’m not sure I would have been brave enough to refuse. You should continue to see her though they might come a time you need the contact with the experts.

Good luck

Jan x

I have been considered to have SP MS for a while - I’m on high dose Simvastatin to prove it. But I did have a nasty relapse a few weeks ago - horrible bladder problems, which have now disappeared after a course of 2.5g of steroids. I’ve always thought these labels were unhelpful.

I must admit labels really mean little to me apart from the fact that with rrms, there are lots of pills to take, some people are taking like 30 a day, what’s the point of taking all those meds if you have pp/sp and the meds are a wast of time, just going to upset the tummy, so it’s nothing to do with am I worse than you? I’m sure there are people like that out there??