i think it depends on the person, i was told i was spms,but i already knew i was spms,before it was ever mentioned,and i thought to myself,its only a label that the neuros use,it doesnt change anything,another neuro then said he thought i was still rrms,who knows what i am,all i know is i have ms and that will never change,so i just get on with it.
I went straight to this diagnosis, which by definition means I must once have been relapsing remitting. That would be when the medics insisted there was nothing wrong with me. I am not sure what the point in the various labels are, other than being a way of denying treatment to those of us labelled progressive.
I do not realistically think I’m ever going to improve anyway. Even RRMS is still a degenerative disease - people tend to forget that. Yes, improve from actual relapses, but as I am currently experiencing few-none of those, I do not anticipate any improvement in my overall condition - whatever damage still persists from earlier attacks. I feel much the same as mrsJ. I’d fully expected to be told this week I was SPMS, and didn’t really mind about it, but was surprised to be told I’m in fact still RRMS - just currently enjoying a very low relapse rate. I feel I have always had subtle deterioration, even in the absence of obvious relapses. I think I’d been losing strength and stamina, but gaining muscle tone (spasticity) for quite some years before I had anything that could be construed as a typical relapse. This probably contributed to the length of time to diagnosis - there had not been marked episodes, although there were symptoms. There are still few marked episodes; I still feel I’m gradually deteriorating. But I’m assured that not having a relapse for ages does not, in itself, indicate I’ve moved to SPMS. I’ve been told, due to the length of time I’ve probably had it (we can’t prove, but can infer) that my relapse risk is declining. I don’t really care what they call it. I believe I’d already had MS for years on the day I was diagnosed, so that particular naming ceremony didn’t change anything - except I could collect the insurance. If we had a new naming ceremony, to say it was now something else, I wouldn’t expect that to change very much either. The MS doesn’t know or care what it’s called, and I don’t have very much interest either. It’s just a convenient way of classifying things - it wouldn’t make me, or my disease, any different. T.
totally agree, we just have to get on with it. But what effect does it have on our familes, work colleagues etc. if we tell them we have Secondary Progressive Multiple Sclerosis. When a friend who was dx’d with spms told his partner she asked him how long had he got to live!
MS is just a name the medical bods gave to our symptoms. It doesn’t mean anything really. When I was diagnosed back in 2007, I was told by my neuro that I needed to start considering the care I’d need in 5 - 10 years time! That really cheered me up - not! Just because no one has yet invented a chemical that will “cure” us, doesn’t mean a way of healing hasn’t been discovered. Leaving the medical bods to find a cure is like putting all your eggs in one basket. They’ll never find it. There’s no money in it. Selling people drugs to relieve their symptoms is more profitable. You’ve only got to look on the internet to see loads of people a getting relief through dietary changes. You need to do what you can to help yourself. Being told you have MS is a real downer. Seeing others improve by helping themselves is a real kick up the backside. Heather
When I had RRMS it was only very mild and in the space of 20 years I had two significant relapses and nothing really in between.
With SPMS there is a gradual deteriotation. Rather than attacking a specific nerve I think it is starting to focus on the brain. Things like co-ordination, balance memory, uhtoffs syndrome and learing skills are now affected and the problems in the early stages also become more accute.
Thats my story, everyone is different. I’m very lucky, MS has not been aggressive. A 30 + year story of slowly trundling along and very gradually getting worse.
Too late for DMT but I am on ASCEND trial for SPMS and tysabri
my answer to that would be ‘how long is a piece of string’ ms or not who knows our fate,my family hate me having ms,but like me they just get on with it, we live in the now,and make the most of what we have now,not eveyone can do this,but i am pleased that we can.
I am all for getting to know everything I can about my MS, but I feel a bit frustrated, as although I have an inkling that I now have SP, my neurologist always says :“I just don’t know”. But as you say Zetland, what difference does it make. I like gardening and have porridge every morning and no doubt this would be the same whether I have RR or SP. Ho hum!
I’ve never had relapses so I’m not sure mine is SP but that’s what is on my notes.
I have never known anything different to the steady decline that is my MS but reading about the relapses some people have I count myself lucky. Agreed RR comes with some hope that your symptoms will disappear with a remission but it must also come with a dread of yet another debilitating relapse.
My symptoms are slow and steady, albeit in a downward direction. I have time to adjust and adapt. It must be hard to come to terms with the need for aids etc when it happens all at once and might be gone tomorrow. Until I just typed that I didn’t fully realize how hard the wheelchair decision, for example, must be if you are hoping that you might not need it next week. For my own part using a wheelchair was a no brainer and I have been nothing but delighted with it from the day it was delivered.
Nothing is ever as bad as you think it will be and SP is no different. There is still hope - I should have a tee shirt printed with “Im wating for my plateau”
Ms is a hard one that even the neuros find hard. I’m rrms with 2 big relapses but forgot to tell them my ankles went sometime in between relapses. And my other hamstring disappeared. I’m lucky in that after the first relapse I can now put one foot infront of the other. Yeah!! But I didn’t gave pain then now I have pain all the time. Today I have really sore muscles in my ‘good leg’ it’s hard both legs harder but different takes some conscious decision to get movements. I’m struggling 2 kids they’re great but at 5 and 1 a lot of work.? It does make me think am I rrms or relapsing with continued deterioration. I don’t know it’s a lot to take in. How do you explain to someone every conscious movement causes me pain. That moving from a to b takes a lot of effort on my part. I fine it’s harder for others than me. My parents want the ‘miracle’ to happen I know it won’t. My kids are just that and accept the now which is a blessing. And me we’d all love miracles but I’m a realist. And my parents see it as pessimistic the whole such and such has 2 kids manages great all by hersd. It breaks my heart. I wAnt to be that person but im not ms has decided for the time being it’s gonna cause havoc thought a new year might see me getting a break but it’s not happening so I just want things to plateu Sorry for the moan It’s that kind of day. Now I’m going a walk with mum and the pram should be greT not lol. Not sure how far ill last but Dad can pick me up if I can’t manage Have a good day x
several years ago i told folk i had the ‘macaroni type of ms’. before i am asked, i dunno what it means either! i am the only one with this ms. i have never known anyone else to experience similar to mine and no-one that copes similar to me.
macaroni was the first word that popped into my head-it could be labelled/called anything! the labels are just to assist the neuros feel worthwhile and knowledgeable. for me the ones that say to me-i dunno, what do u think? are honest and are of more support to me than the ones that try to give me the text book answer because there is no real answer!
i am aware that the current labels may open doors to certain treatment eg dmd’s but they dont suit all and so makes the whole label thing even more confusing, not helpful.
I agree with what a lot of the other posters have said, you have to get on with it and live in the now.
My diagnosis came straight in with SPMS, it’s all I’ve ever known or my friends and family.
SPMS is as varied as RRMS and so everyone’s experience is different. Personally it’s taught me to enjoy each day and the little things - a cup of coffee with a friend in the sun. Too many people in my life are no longer here so I am just grateful that I am.
There is no getting away from it, MS is a bugger. I am not going to let it wreck my day anymore than I have to.
Intrestingly the point of this thread has been missed! -
All the replies have come from people describing how they handle the dx of spms or how they think they have/have not got spms.
What I was asking is what impact does a dx of spms have on friends/family/colleagues/boss when you tell them your m.s. is Secondary Progressive.
And how does their reaction impact on us.
If I knew nothing about m.s. and someone told me thay had m.s. and it was Secondary Progressive I would expect them, with that terminology, to be dead very soon!
Sorry I was responding to the above points in your original post. In response to the other points I woould say that the people you know are obviously more aware than most people I have met.
In my experience, people only hear the words MS and then leap to their own conclusions from that. Usually the conclusion depends on what the media have been up to.
It’s usually IF they ask me if I have good or bad days that I then go on to explain my MS is progressive and that although overall there is a steady decline, I usually wake up as I went to bed.
One thing I have learnt is that it is usually up to me to manage others’ reactions.
It does seem, zetland, that you have missed the point of your own questions.
SPMS is a label just by being the short form of Secondary Progressive Multiple Sclerosis.
Labels facilitate communication, and their application is a normal human function.
If someone does not know what the label means, then either they do not need to know, or they can ask.
If you do not like the label SPMS - for whatever reason - then lets change all the labels:
PPMS becomes Type I
RRMS becomes Type II
SPMS becomes Type III
So you tell your friends/family/colleagues/boss that you have Type III MS.
Nothing in your condition has changed.
The only thing that most of them can do is to ask “What does that mean?”.
If they care about you they will ask.
So: “I’ve been diagnosed as SPMS.” will get a response of “What does that mean?”; or no response.
Either way, this makes no difference to your condition - and for you to answer the query, you whould have had to ask the same question.
Now me, I know the exact date on which my Dx will become SPMS (Aug 6th).Will it make any difference? No.
Intrestingly the point of this thread has been missed! -
All the replies have come from people describing how they handle the dx of spms or how they think they have/have not got spms.
What I was asking is what impact does a dx of spms have on friends/family/colleagues/boss when you tell them your m.s. is Secondary Progressive.
And how does their reaction impact on us.
If I knew nothing about m.s. and someone told me thay had m.s. and it was Secondary Progressive I would expect them, with that terminology, to be dead very soon!
[/quote] In my experience, MS is MS as far as civilians are concerned. I have never come across any healthy person who is remotely interested in the finer points! Alison
Zetland, you need to talk to someone about your anger issues. Your reaction to MS impacts on us. Most people wouldn’t know what spms means so why would they instantly think it’s a death sentence. If you were telling someone about your MS you’d explain what it meant so they wouldn’t leap to the wrong conclusion.