I have secondary progressive MS. I was diagnosed 20 years ago (1994) via lumbar puncture and MRI. The MS websites all say that secondary progressive begins as relapsing/remitting, but I have NEVER had a remission in the 20 years I’ve had this. Does any other MS-ers have similar experiences? I was diagnosed immediately with secondary progressive.
Hiya…I’m not too clued up on all this as was only dx last April 2013 but I’m currently going thru something similar as even though was dx as rrms my neurologist told me today he’s not sure which form I have now as I’ve never really had a relapse so I’m thinking either ppms or spms and with the spms maby I had small relapses over the years I never noticed or didn’t hugely effect me so now it’s developed…or what I’ve scared of its just ppms…
what is the difference between spms and ppms-do you just progress slowly with both?
Hiya
I’m secondary progressive. I started with RRMS. First symptoms were a bit of numbness, dead leg and double vision. To be honest I don’t think labels mean much to me personally. Currently there is nothing on earth that is known to stop MS. I look at myself as a machine, a car maybe. When something breaks on it you need to know how or why it’s broke before you can fix it.
Same with MS. The engineers (boffins) need to know how and why it’s broke before they can fix it. Then they can treat the ‘cause’ and not just symptoms.
We are all on this journey together. Maybe a bit bumpy. Some have scenic routes. Some are in the fast lane but hey… we all have the same destination.
I think I will use my car analogue with my neuro consultant tomorrow. Hmmmmmm
Take care,
Marty
Hi Jayrossi I too was diagnosed 1994 but with RR and only recently (last Feb) moved onto SP but like you I’ve never had times of remission always had some symptom or other all of the time and think the one that I’ve had for over 12 month now is the one thats bothered me more than any of the others. I look at my MS as just MS and dont put a label on it anymore, whats the point which ever it is its MS end of. Great init Sue x
Jayrossi,
As I understand it, the usual path is to either:
a) Be diagnosed with PPMS from the start (…Primary Progressive MS doesn’t ‘develop’ as you go along …hence ‘primary’).
b) Be diagnosed with RRMS initially (Relapsing/Remitting MS), which may - or may not - go on to become SPMS (Secondary Progressive MS) over time.
I don’t think you can be diagnosed as SPMS from the word ‘go’ - it’s either PPMS or RRMS to start with !!
With RRMS, you get attacks (sometimes called ‘episodes’ or ‘exacerbations’) where a specific physical function is greatly affected for a varying period of time (might be a few days, or might be many months), followed by a period of remission where anywhere between 75% - 100% of the affected function is recovered.
With progressive (PPMS/SPMS) MS, there usually aren’t separate ‘attacks’ - just a steady & ongoing worsening of symptoms. This ‘worsening’ may be very slight and a very gradual process, so at least you get more time to make any necessary changes.
I was initially diagnosed with RRMS back in 1999, but this was re-categorized as SPMS about 5 years ago.
Dom
This catgegoristaion of m.s. into rrms, spms and ppms is horrendously flawed and should no be taken too seriously.
3 questions -
What exactly is ‘remmision?’
If I have a right leg gradually getting weaker with no impovement and a left leg that is sometimes o.k. but other times weak what type’ of m.s. have I got?
If I am dx’d with spms does that mean I will never ever see an improvement anywhere?
Hi,
I was dx in 1995 but never told what sort of MS I had.
For 20 odd years I was stable – no relapses so I didn’t have RR.
Now symptoms are getting worse all the time and I have SP on my notes but I suspect that I was PP from the start. Not that it makes much difference in the scheme of things. It is what it is.
Jane
[quote=Wendels]
Hi,
I was dx in 1995 but never told what sort of MS I had.
For 20 odd years I was stable – no relapses so I didn’t have RR.
Now symptoms are getting worse all the time and I have SP on my notes but I suspect that I was PP from the start. Not that it makes much difference in the scheme of things. It is what it is.
Jane
Being labelled SPMS, sometimes erroneously, takes away any optimism we may have. And there’s nothing wrong with a bit of optimism!
So, what are you optimistic about, zetland ?
Dom
I am optimistic that one day various parts of me that are not working well at the moment may improve - it may only be small improvement but don’t take that hope away from me and my family.
I was never told which type of ms. I was told on a visit to a different specialist that on my notes it said ppms/spms so who knows.
I would have liked to have been offered dmds so that I felt like I was fighting back.
The only symptom that has gone is the hug, everything else has progressed or evolved, but I still hope for improvement
Lynn
Zetland,
I hope things do indeed improve for you in due course !!
Best wishes,
Dom
My immediate reaction, Jay, is that you were misdiagnosed, or perhaps even something as stupid as a typo - PPMS/SPMS? Not hard for a typist to get one letter wrong, or misread one letter in a neuro’s scrawl (although he should be checking his outgoing mail).
The only other thing I can think of is if you had a history of illnesses or “incidents”, which were diagnosed retrospectively as having been MS relapses. This might make it possible to infer you’d had RRMS for quite a long time, even if it hadn’t been positively diagnosed at the time.
Oh, I have just thought of one third possibility, which is that you’d been diagnosed with RRMS some time previously, but they’d not told you! I doubt this would happen today (at least, I hope not!), but if we’re talking over 20 years ago, attitudes were different.
For a start, DMDs weren’t available (until approximately the early 90s, as I understand it), and we didn’t have the comprehensive anti-discrimination laws we have to day. So some neuros, suspecting, or even feeling sure of a diagnosis of MS, might feel it was not in the patient’s best interests to tell them. This would be frowned on today as unethical, unless there was some overriding reason the patient’s health and safety would be compromised by being told - e.g. they were a suicide risk. But back when little could be done about it anyway, and it was still lawful to turn down somebody for a job or mortgage because they had a serious illness, some consultants may have genuinely believed it was kinder and most practical to withhold diagnosis, as that would have least impact on the patient’s life.
So, it is possible that whilst your notes said RRMS, you were never told - until things got bad enough that it was clearly SPMS, and past the point where not telling was an option.
I’m reading a true book at the moment - the first time I’ve ever plucked up the courage - the diary of a youth/young man who only learnt he’d been diagnosed with MS when he was turned down for the army at the onset of WW1, and wondered why! I realise this is not your era, and you’re not that old, but it illustrates how it was often handled until quite recent times. Just not considered in the patient’s interests to know.
In those days, life expectancy with MS was considered to be about five years (there were NO antibiotics, so you could die of your first urine infection). The poor young man was horrified, but decided not to tell his wife and family, to spare them the anguish. Only to find they’d all known before he did - and his wife even before she married him!
I haven’t got to the part, yet, where he finds out - he’s still quite a young and precocious boy. But he does have occasional bouts of very bad toothache (trigeminal neuralgia?), and periods of ill health that are not well explained. He also muses quite a lot on mortality, and the futility of life, but perhaps a lot of self-absorbed teenagers do that? But the reader who knows what happened keeps wondering: “Was that the start?, Was that the start?” Maybe the toothache really was just childhood toothache - we can’t know.
The book, for anybody who’ interested, is: “Diary of a Dispappointed Man”, by W.N.P Barbellion (a pseudonym of Bruce Frederick Cummings). It’s considered one of the most famous firsthand accounts of anybody living with MS - especially as it also covers the period before he knew, so you can see how the insight changes him.
The version I’ve got was a free or very cheap Kindle download, and seems to be rather abridged in the early years - but I’m not sure if all editions are abridged. I thought it would be upsetting to read, but so far, I can’t wait to learn more, even though I know what’s going to happen. I find myself warming to him quickly, even though some reviews do not portray him as a very likeable character. He did have grandiose ideas for his future, but I find that all the more poignant, when you realise it’s true of most young people, before reality sets in - and you know reality’s going to set in in a really cruel way, for poor Barbellion.
Tina
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