Hi Everyone, hope you are all not too bad today.
Primary and Secondary Progressive MS, there is no difference. Discuss.
Soon there will be drugs for Progressive but mainly for either SPMS or PPMS. So this is important.
Thanks,
Dave.
Thatās what Barts think too:
http://multiple-sclerosis-research.blogspot.com/2017/04/is-progressive-ms-at-long-last-getting.html
Jo x
Hi Dave
I was diagnosed in 2013 with SPMS and now my MS has progressed to full on Progressive Multiple Sclerosis, 4 years ago I was working ,walking, driving now Iām sitting in a chair 14 hours a day and in bed lying down 10 hours, and with all the other things that come with Progressive MS and my EDSS score is 8.00. PPMS is something you get diagnosed with at the time SPMS is apparently the stage that comes after RRMS those I was never diagnosed with RRMS just skipped that went straight to middle stage of SPMS.
All the best Deborah x
At dx my consultant had written PPMS but when I mentioned I had over the years had patches of numbness he then changed it to SPMS. So tbh I donāt think there is much difference between the two.
Mags xx
Hi Robin, interesting, this confirms how vague and dare I say woolly PPMS/SPMS diagnosis is. Some Neuros say PPMSers could have been RRMSers beforehand but didnāt have noticeable symptoms, so could be SPMSers really. It may seem all a bit academic but when it comes to drug prescription in the future the SPMS/PPMS label will be crucial to whether you get help or are left to rot.
Thanks,
Dave.
Interesting. Iāve seen four neurologists. No 1 said PPMS, them I reminded him Iād once had double vision which had cleared of its own accord, I was clutching at straws thinking this might get me a dx of RRMS and treatment, but no, then he said SPMS. Neurologists 2 and 3 went along with SPMS without question. Number 4 said it should have been PPMS all along. I donāt have a neurologist at all now. The end result remains the same nothing for progressive MS and there seems to be little interest in finding anything.
That is bad news., no progressive result! Try to have it discussed with your doctor you might need a switched of medicines.
Hi Dave,
I was dx PPMS in 2010 after being dx MS in 2008. But I had lived with weird symptoms for many yearsā¦ about 25 years actuallyā¦ which GPs always put down to anxiety or hypochondriaā¦ and in fact I believed that I was a hypochondriac & stopped bothering to see GP.
Looking back those symptoms certainly came in episodesā¦ predominately fatigue, but also difficulty swallowing, cognitive problems and pain in wrists and hips.
I now believe that I had mild RRMS and it was only when things got worseā¦ ie it had become progressiveā¦ that I started to really believe something was wrong. Luckily at that time I had a good GP who believed me!!!
So I do think that someā¦ or maybe more than someā¦ people dx with PPMS might actually have SPMS!
Not that it makes a blind bit of difference as there arenāt good treatments for either, but it is interesting and explains WHY some of us have had years and years of undiagnosed symptoms!
NO we were not hypochondriacs! We had MS!!!
Pat xx
There no treatments for progressive MS - we donāt medicines, we just donāt them.
RRMS and progressive MS are practically different diseases, especially in treatment termsā¦
I was diagnosed Feb last year with RRMS.
In Nov last year that was changed to PPMS.
Currently I feel better and more mobile since day one. The only thing dragging me down is my energy levels.
Hopefully the new Nutribullet will sort that out.
As I understand it, PPMS starts as just that and doesnāt change from or to, any other type. It usually just keeps progressing.
I think the initial diagnoses mustāve been wrong.
There are new drugs for it in the pipeline, but how long is that pipeline?
Pollsx
Since I was diagnosed Feb 2016 I havent noticed any progression in the last year. In fact I probably feel better now than I did then. My dizzy spells and balance issues have improved its just my legs constantly ache but no more than a year ago.
I don`t really understand what is happening.
PPMS just means that you wonāt get remissions - it doesnāt mean that you will always feel worse day after day, some people plateau for years. In fact, things do fluctuate anyway, depending on external factors, such as heat, and I find fatigue cumulative - if overdo it one day, I donāt have as much energy the following day and often that carries on for quite a while.
But - the type of MS you have is just a label. Itās an inconvenient one, as itās used to determine whether you get treatment or not. But I find MS will just do whatever it wants, it doesnāt conform to a medical definition, as no-one told it to. And it does whatever it wants anyway. Some people diagnosed with PPMS will go on to have a relapse, some people diagnosed with RRMS wonāt ever have another relapse.
Thereās no specific test for MS (10% of people diagnosed with MS are found to have something else on autopsy), and there certainly isnāt a test for the phenotype - and the only person with your type of MS is you - it really is personal.
Your future is uncertain - but then, so is everyone elseās. And I mean everyoneās, not just pwMS.
Jo x
Itās not the diagnosis that is woolly - itās the labels that are used to try and describe us.
OK, so psychologically speaking, labels facilitate communication by cutting out the need for very long descriptions.
The principle fails when an individual āfallsā between two labels. So a new label gets used.
Not everyone understands the new label, so there is confusion - lots of it.
The old way of thinking about MS was:
Primary progressive.
OR
RRMS > SPMS
Then you got the new terms creeping in - āBenignā MS, = a long time between relapses - āRelapsingā SPMS = we are not quite certain if the change from RRMS has occurred, but we have stopped an expensive DMD.
I was changed from RRMS to SPMS when I apparently stopped getting worse, and was not getting any relapses (the Neuro did not accept that fatigue for more than a few days could be a relapse unless there were neurological symptoms as well. That was nearly two years back, and it got me off Copaxone (from the hospital budget).
So for the last ten days, I have had extreme fatigue, coupled with a noticeable loss of motor control in my legs.
I could be having a long time between relapses in RRMS, but I guess that the āRelapsing SPMSā label would be used to avoid a neurology department looking silly (and having to start me on another DMD).
So what, in a couple of months I will move a long way away, and get a referral to another hospital, and get (hopefully) a new Neuro, and a new MS nurse. This should get me looked at afresh - but when they consider my age, I doubt if anything will change. I am more concerned that the medication I am on will continue (but itās a lot cheaper than a DMD, and most of it comes off a GP budget). Time will tell ā¦ ā¦
Geoff
Cheers Jo.
Bottom line is, anything can happen at any time.
Thatās a really good summary Jo, thanks. The fatigue being cumulative is very true - Iāve finally had a parcel delivered today, but have had to be up very early (for me), ready and waiting from 8am til 8pm since monday. It puts me off ordering stuff as I donāt like using the āleave with neighbourā option too often! Anyway, that type of thing takes itās toll and can take weeks to fully recover from ā¦ I find!
There have been some good replies to Daveās discussion topic and Iād say youāve summed it up well.
I always believed, and after speaking with many diagnosed with RRMS, that that, and PPMS are basically, as you say, two separate diseases. Lots in common, as many other diseases have with MS, but I didnāt think that relapsing remitting ms could eventually lead to primary progressive. I wouldnāt be surprised if someone came back saying āIt canā though, as it all seems up for debate still!
You have to wonder about the āwilderness yearsā, before you get the PPMS diagnosis ā¦you yourself know thereās something badly wrong, but you can still walk (with crutches maybe), and the other symptoms/effects are fairly mild + many lesions but not exclusive to MS - I look back now thinking, wasnāt there enough to diagnose secondary progressive ms as a starter for ten, so to speak ā¦ but then, within another year, it became very clear that mine was actually PPMS as I couldnāt walk at all, and could only stand to transfer ā¦ little kids would ask āare you very sickā? - and Iād say āwell the doctors say Iām notā! To be fair though, I do think MS must be hard to diagnose for certain. The trouble with that is, you do start to believe the doctors and question everything yourself - with me, Iād had an epidural in the months leading up to being diagnosed which went slightly awry ā¦ I didnāt really know what an epidural was, but was told when it was finished, that the young man doing the procedure, had basically missed the intended target and hit the pelvic area instead. Just wanting to get home, I was asked to sign some form or other which was witnessed by two other people - I think to say I felt ok (after half an hour in the waiting room with tea and biscuits!) and would inform them, or my doctor, should I become ill over the next few days. It gets worse from there actually but I think Iāve said enough as bringing back bad memories Iād forgotten. Anyway, you can probably guess what I started to blame (for the rapid decline which followed), if it wasnāt going to be MS!
Sorryā¦ Iāve only been a member for about four days and keep apologising for going on ā¦ about me mainly! I donāt intend to, when I start writing, but maybe you just have to get a few things out first! I was going to empathise with Deborah re the rapid decline with ppms and ask Doctor Geoff about the leg motors? As I say, I can only stand with grab rails etc which is fine, but now - the strength seems to be there, but the bones/joints want to bend in all the wrong ways!
Best wishes, chris x
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No need to apologise, Chris, if you need to let it out - youāre in the perfect place - just post away and get those answers!
Jo x
It sure can - but that applies to everyone - pwMS just happen to be a bit more aware of that