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RRMS SPMS PPMS isn't it all just MS

Isn’t it just all a case of the older you are the less your body repairs (Inc Myelin),and the younger you are the more active your immune system is so hence more attacks. . get MS young they usually say it’s RRMS, active immune system, body repairs. Then you get older and it’s SPMS , common sense. PPMS usually get diagnosed with this when you are older, again common sense really. They may be some exceptions to this but not many I have known. Shouldn’t it just all be called MS. I only thought about this could a young lad I know only 26 year old has just been told he has RRMS and asked me what the difference is with All the different sorts. I came to the conclusion it’s usually age.

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He just thought it was all confusing and overwhelming and I am inclined to agree that it is all a bit unnecessary.

I believe it is all MS, but some of your reasoning isn’t quite right (imo). For many people, they start as RR at a later age, say their 50s or older. And many people remain RR all their lives, never becoming progressive. And some people are diagnosed initially as RR in their 20s or younger, then the diagnosis is altered to PPMS within a few years. (Generally PP is diagnosed as such only after a few years with no changes on MRI and no remission phases.) There does seem to be some difference within the category PPMS from the RR/SP variety. The PP tend not to have relapses, maybe odd spots when they get temporarily worse, but not real relapses. And the fact that DMDs either don’t work, or don’t work very well. Hence the Ocrevus scandal, that it does work for PPMS, but not as well as for RRMS, so they can’t have it. Despite there being no other DMDs available to them (this is why I think it’s scandalous!)

Then there are people like me, definitely RR for at least 18 years. Then it’s decided I’m progressive about 2 years ago. Earlier in the summer I had what seemed like a mildish mostly sensory relapse. Then last month I had a proper motor function relapse. Treated it with 5 days of high dose steroids and I had not only a complete remission, but some of the symptoms I’ve had for years have made slight improvements. So much so that my rehab neurologist went back to his notes from 7 years ago and is astounded by the improvement to my right leg and foot drop. He said he’s seen hundreds of cases of foot drop and never seen improvement after 7 years. (A medical miracle!)

So he thinks I should be on a DMD. And when I questioned whether I’d qualify, having been classified as SP, he said they are starting now to talk more about ‘Active’ disease and ‘Inactive’. Equally, there are many neurologists and PWMS who prefer to use the word ‘Advanced’ as opposed to dividing us into categories.

So yes, in essence I think your initial question, ‘Isn’t it all just MS?’ is correct, but there are loads of arguments back and forth within that.

Sue

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Good answer Sue. Glad to hear you have made such a good recovery. I have had MS 24 years I still get some relapses but not to the degree I use to but I don’t recover from them as well. Just seems to me that my immune system isn’t as strong and my bodies ability to repair is failing. So to me I have just had MS since I was 19 and I am declining through the fairly obvious factors and don’t feel I need reclassification. So I just say I have MS, keep it simple.

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Totally agree with you Belly1.I dont take any notice of the labels MS is MS to me whatever label they try to give me.After many years living with i have become my own expert in my own MS.

Ppms is differant to r rms and spms usually lesions are in spinal colum no relapsing just progression for me luckily slow

Progresion touch wood and no dmd,s available .

I take tramadol and pregabalin for pain .

These labels rrms/ppms/spms are far from accurate. but there is more to us all than ‘our’ m.s. We all have bits that are unaffected, yet we are defined as if all our being is in a state of deterioration/decline. If, God forbid, we have cancer we say we have ‘a cancer of the ----’ Why do we not link these m.s. labels to the parts of us that are actually affected? Why do we not say for example that ‘my m.s. affects the legs’ if that is the case, or say that the m.s. affecting my legs is secondary progressive.

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The doctors like to put us in boxes and give us these labels , “ooh you have rrms, and you’ve got spms” (blah blah , blah !)

at the end of the day ms is ms. Wishing everyone good health for 2019.

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Over the last 18 months I’ve been told I’m still RR, then I was SP with Relapses, then Transitional, then back to RR then full circle back to SP.

Basically it depends on which neuro I speak to.

On one consultation I was told, “you’re RR, BUT everyone gets older so repair to the myelin is slower as we get older, therefor it’s a bit like progression” !!

In other words it is what it is !!

I recently informed the PIP people that I had gone from RR to SP, so I asked for a letter from the clinic to support this, the letter came back as TRANSITIONAL, yet an older letter from earlier in the year states SPMS ?

What is the PIP assessor to make of “TRANSITIONAL” ?

Maybe I’m about to turn into a bloody butterfly !

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Nice one jactac, that would be ok. We get old we deteriorate, just like every other animal on the planet.I bet butterflies have their own issues.

I don’t know how anyone, least of all the PIP/ESA assessors, are supposed to deal with the labels we struggle with. I’ve gone from RR to SP and now relapsing progressive. Yet I suspect my new neurologist, who is applying for funding for a DMD, is possibly going to have to downgrade my EDSS score, from 7 to 6.5 (because the qualifying criteria is a maximum of 6.5) and/or relabel me again as RR. And I don’t want either to happen. Changing my label to RR could make a difference to ESA. Equally, changing my EDSS score could make a difference. And essentially, both would be a lie. I can’t suddenly manage to walk with a pair of crutches, when I struggle to walk a few metres with a walker.

Personally, I am happy with being labelled as ‘a person with MS’. Or maybe ‘Advanced MS’. Who gives a stuff at this point (it’s my 22nd MS birthday in 2 weeks!) whether it’s RR or SP? It’s crap, that’s what it is.

Sue

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“CRAP MS” Now there’s a title we can all associate with !!

In my case K.I.S.S. = (Keep it simple stupid!)

I’ve been told by a Neurologist I have progressed to SPMS, so just accept my cr@ppy Disability.

I am classed as RRMS so that I can still get Tecfidera but then when I asked for a supporting letter I was classed as SPMS. Seems to me it depends on circumstances other than the actual state of your MS as to what you are labeled with. Crap MS with occasional rays of light which soon diminish is the label I would put on mine 25 yrs in.

I have PPMS. My main disability is chronic walking difficulties caused by leg weakness and foot drop affecting my left side. I have to use a foot up splint and crutch everyday. I have to hold onto my husband’s arm to walk anywhere because I have ataxia. Combined these symptoms means I am vulnerable to trip and fall, I find uneven surfaces a challenge to walk on. My days of walking any distance as I used to, or walking the dog are over, as are all the other outdoor activities I used to enjoy doing (snowboarding,climbing volcanoes,working in front of a computer). I am mainly house bound now unless my husband is around to support me. I sometimes trip up at home even with my aids. Showering and washing my hair is a major achievement. Gone are the days of carefreely hopping in the shower. I don’t have bad days or good days, bad periods, or good periods of time with no symptoms. Everyday is the same. MS affects everyone differently, but from what I understand of the different versions, the main difference is whether it affects you the same way everyday PPMS or SPMS, or have periods where symptoms go away RRMS. I’d love a few days of my old life sometimes but accept my days of running or even walking any distance by myself are gone. We’re all friends on this forum. We all have access to the internet with useful info. MS is a nefarious disease. How much it is affecting your life over a period of the next year for example, depends on which type you have.

My MS nurse told me the illness is the same no matter what label it’s given

Look it up on the internet. There are DMTs for RRMS, there are none for PPMS . Double check your understanding with your MS Nurse.

Yes, you are right, there are DMDs for people with RRMS. But for those people who are diagnosed with SPMS (having had relapses and/or a very long journey to eventual diagnosis) there are none. And for those people diagnosed with RRMS before 2002, there were none, and only the interferons and glatiramer acetate from 2002 for many years.

And for people like me, who have been intolerant of nearly all the available DMDs, there have been none. So I am now in the situation of having been RR, then rediagnosed as SP, suddenly having relapses again. The only DMD I could take is Copaxone which stopped working for me before when I used it. And although my neurologist wants me to start taking it again, I actually am doubting that he’ll get the funding.

The cut off point for eligibility for DMDs is 6.5 on the EDSS. This implies you can walk with two sticks. I am 7 on the EDSS and significantly disabled. And for relapsing progressive MS, the only DMD available is interferon 1b - Extavia. And I can’t take interferons.

So for me, I’m suddenly relapsing progressive but unlikely to be able to take a DMD. So I could have further even greater disabling relapses with no possibility of a DMD.

Many of us have had this same conversation over the years, we do experience many of the same symptoms regardless of label. You may as well say there are hundreds of thousands of varieties of MS given the amount of individual difference within the basic disease. Neurologists are now often talking of ‘Active’ MS, rather than ‘relapsing’. Even some people with PPMS have experienced peaks and troughs looking much like small relapses. And many people prefer the term ‘Advanced MS’ to SP or PP, once you get beyond a certain point of disability.

There is a ‘Prescribing Algorithm’ for DMDs. See https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2018/09/Treatment-Algorithm-for-Multiple-Sclerosis-Disease-modifying-Therapies.pdf

So the statement, ‘We all suffer from MS’ is enough for me. And for many others who have been labelled RR/SP/RP. Even many with PP.

Sue

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I’m not a doctor or a scientist, but I think what you say is interesting and plausible. It makes a lot of sense to me. Do you know if there is any research work taking this angle on it?

Hi Storm. Yes, that’s really hard. I got a provisional diagnosis for years of probable MS. One neuro said RR and one said PP. The neuro that said RR said I could be considered for DMTs. So I really wanted to stick with that one, but I couldn’t afford to live in the city anymore, and my partner and I had to move to a smaller town within a different health authority. I am now officially diagnosed with PPMS, so not eligible for disease modifying treatment. It feels literally like a postcode lottery, as if I had been able to afford to keep paying housing costs in the city where I used to live, then I could have had the diagnosis that they treat.