Most people, when I tell them I have MS, just ask what is that? Unless they already know someone with it, they aren’t aware of the different types. They have trouble enough understanding what MS is before I try to complicate things with the different types so I just tell them how it affects me. I was diagnosed with ‘mild’ RRMS but the neuro then proceeded to tell me that I had had two significant relapses within 3 months and needed to start on DMDs immediately. With hindsight I think his use of the word ‘mild’ was intended to reassure me somehow but it doesn’t make any difference to the MS what label is put on it. I wish mild meant that in between relapses I would have some relief from the constant stiffness, pins and needles, fatigue and pain. Sadly that is not the case. Tracey x
Whatever we think of the accuracy of the diagnosis the fact is many people are told by their neuro that their type of MS is Secondary Progressive. Many people have posted messages to that effect on this site.
People then have a choice of whether to tell or not tell others that they have SPMS.
If I may, can I ask those people who have told friends/family,colleagues etc that the have Secondary Progressive Multiple Sclerosis – what was their response to the words - Secondary Progressive?
Zetland,
I thought the majority of newly diagnosed forum users were told they were RRMS initially.
What’s muddying this is the number of people - new to the forum - being told they’re SPMS on formal diagnosis but believed to have had MS for some time ‘before’ diagnosis !!
My family have some familiarity with MS as an Aunt was diagnosed with it years ago. They also do a reasonable amount of reading about the condition and ask me questions whenever they feel they need to. Most of them have a pretty good understanding of the different types of MS, so they understand what SPMS means.
I don’t think my ‘friends’ ever understood the condition and showed no interest in learning more about it. Can’t say I blame them !!
Dom
Sometimes ‘family’ reading things can be dangerous. My ex his family hadn’t seen willow and hadn’t heard a thing until my formal dx. Then I get questions from ex so which one are you. I hadn’t been told at that point. But they all now think they are ‘experts’ I’m the one with ms and haven’t a blo**y clue. I think the label is just easier for them to give you treatment. Thanks emma
In this respect, I’m very lucky. My family read things about MS, and then tend to ask if I personally experience a symptom they’ve read about.
If it’s not relevant to me, it simply gets crossed-off the list of possibles !!
Mostly, we’re focussing on possible treatments at the moment - and have already dispensed with several treatments/medications/interventions as inappropriate …often potential side-effects far outweigh potential benefits.
…But we’re all different, so I won’t write anything off without trying it first, so I can judge MY results first-hand.
Maybe it’s a generational thing …my own parent will take anything the GP throws her way, no questions asked.
If only I had that kind of trust & belief !!
Dom
Dom,
Made me laugh - my mum is like that. Keeps asking: “Is your vision still alright?”, as if everyone with MS always went blind.
“No, Mum, blind as a bat, and have glasses like milk bottles - but nothing to do with MS. You can thank Dad for it, as he did too, remember?”
Tina
thanks for the replies, even the ones that missed the point!
Can anyone complete the following sentence –
‘When I told my family/boss that I had Secondary Progressive Multiple Sclerosis their response was …’
Zetland,
Presumably you had a response from YOUR family/Boss .when you told them …what was that and if anyone else reports a totally different response, what does that mean ?? That different people react different ways ?? Golly …imagine that !!
Dom
…there respnse was to look at me.as if they didnt have a clue what i was saying…
What does it matter what label your MS is given. Mine was diagnosed as mild in 2000 and now is apparently Secondary Progressive. People who don’t have MS have no realistic concept of what is actually happening to the person with the disease. MS affects everbody differently and no two people are the same. Some people are lucky and the disease doesn’t progress too far. Others of us deteriorate over a number of years. Mine is now deteriorating rapidly and seems to be quite aggressive. The people around me can see for themselves what is happening but it is happening to me, no-one else, and who actually cares what label it is given. When I was diagnosed I very quickly became aware myself that it would go downhill. I had 15 fair years and knew it was going to catch up with me eventually but like so many of us say, you adapt and get on with it! There are only two definates in this world “death and taxes” and unfortunately we can’t get away from either, so who cares what label we are given. MS is not terminal, just a very big inconvenience in life. We just have to adapt (or not) as the case may be. Linda x (Just having a day of acceptance, can’t say I will feel the same tomorrow!)
LindaH - thanks, I don’t think that it matters to us what label we are given because we can acept it or reject it. What I wonder is what do other people think when we say we have Secondary Progressive m.s.
Not everyone understands the different types of m.s. – why should they – there are different types of diabetes and I don’t understand them.
My personal view is that the dx of spms is flawed so I have never used that description.
Putting the term Secondary Progressive after any illness/condition makes it sound pretty grim, even terminal? Were my neighbour who has diabetes to tell me that her condition was Secondary Progressive I wouldn’t hold out much hope for her.
The whole point of this thread was to get people’s opinions on the effects the present m.s. terminology may have on those nearest them. What seems to have happened is that people have assumed that bcause they understand SPMS then it isn’t a problem to others. My concern is that when we tell people we have SPMS we may put an additional burden on our families/colleagues and we may be perceived by them as people who are a lot more ill than we really are – that doesn’t do us any good!
Thanks to everyone who has replied.
Secondary - not the initial state
Progressive - continually evolving
Why would anyone think that means ‘terminal’ ?
If you’re telling someone you’re SPMS and you’re not sure if the term is being understood, then explain what it means if you feel you need to!
thanks ‘anon’ -
I looked up ‘progressive’ and it means change,improvement,towards better conditions - I guess the term is a misnomer!
Tell someone you have m.s and they will have an idea for better or worse of what things are like for you based on their personal perception of m.s.
Tell someone you have a ‘Secondary Progressive’ condition and they will put their own inrterpretation on that phrase and will treat you correspondingly. I think it would be the ones nearest to us who may have difficulty wih that terminology. If they perceive it as meaning the future is gloomy, and I think many will, then it will affect how they interact with us.
I don’t think most non-MSers; bosses, friends, family etc. would have the foggiest clue what it meant, unless we went out of our way to enlighten them.
I don’t think, as a term, it’s particularly frightening or sinister in itself. If somebody told me they had a secondary progressive form of some hypothetical disease - not MS - that I didn’t know anything about, I can’t see anything about the mere words that would make me assume it was a death sentence.
I might answer: “Oh, I didn’t know there were different forms!”, or just: “What is that, then?”
It’s not uncommon for people to believe MS in itself is a death sentence, without even knowing anything about types. I’m RRMS, currently v. low relapse rate, and NO externally visible disability. Even I have been asked how long I’ve got, and also told, in a way I assume was meant as some sort of consolation: “Oh well, we’ve all got to go of something, I suppose.”
Go? Go? Where am I going? It’s not usually regarded as terminal!
Tina