Forum

Apparently we have "proper" MS....

According to a hospital consultant I know.

Sure, whole can of worms etc., and I’m not inclined to take sides or qualified to pass comment, but has anyone else out there been led to believe that PPMS and RRMS are chalk&cheese?

Think I need a support group, as I really could do with talking to some fellow MS sufferers. I don’t know anyone else. I’m assuming we’re all basically the same.

Some prior research and thinking says that PPMS might be a completely different condition/disease to RRMS, whereas it is now thought by some that they are two strains at opposite ends of the MS disease ‘Spectrum’.

Many of the symptoms can be experienced across both of these diagnosed types, but with PPMS the first noticeable symptoms tend to be related to balance and problems with walking. From what I have read/been told this is due to lesions mainly being found on the spinal cord in PPMS, with fewer generally being found in the brain at onset.

The important thing to know is that sometimes the same, or similar symptoms can be experienced across both of these two types of MS, but on the other hand can also vary from person to person even when they have been diagnosed with the same strain of MS. I know this as a friend of mine has RRMS and experiences the same symptom as I have (a feeling of electricity running down my spine/legs if I look down (It doesnt hurt but feels quite peculiar). Fatigue is one of the symptoms that seems to be common across all types.

I try to think of my range symptoms as ‘bespoke’ ;O)

So far I’ve found It’s all a learning curve. I have recently joined the local MS Society Group membership, as early as last week. I am already very happy with the help and support I’ve received and would thoroughly recommend being a paid up member. They can put you in touch with local people who have the condition who so far have beenonly too happy to talk about the condition and their experiences.

All very interesting.

I personally do not have lesions on my spine (although there are ‘marks’ that could be either lesions or 'wear and tear) and my first symptoms were not problems with balance or walking.

I’ve been very interested in recent school of thought (I think on Bart’s Blog) that PPMS might be people who have had extremely mild RRMS, who only sought medical help when symptoms became a problem… because they had become SPMS.

I think I fit into that catorgory as over many years I have periods of odd symptoms… sometimes saw GP sometimes didn’t bother… & when symptoms did get bad I was eventually dx with PPMS.

But I don’t think that all PPMSers fit into that ‘profile’ and many have a more ‘classic’ PPMS with spinal lesions.

Clucker Pigeon, I’m not sure if I think they’re different conditions or not… but it’s a very interesting idea esp as surely it will mean that the ‘cure’ (whenever it comes!) will have to be different for the different types?

Galdor, that Group Membership sounds interesting. I’ll take a look at that.

Pat x

I too find this very interesting. I seem to have ‘classic’ PPMS with early symptoms being problems with balance, walking and bladder. I do not know where my lesions are, as I was dx’d by an MS specialist without an MRI. I do expect them to be on my spine though. Like Galdor I agree that everyone’s MS i’s ‘bespoke’ as no one seems to suffer in the same way. Things are similar but everyone has a different set of symptoms and problems. Let’s hope that the scientists make a breakthrough soon to sort us all out! Teresa xx

Hi Clucker,

PPMS is the version of MS which is harder to diagnose and is the one most likely to be misdiagnosed. I read on the Barts Blog that the Prof is extremely wary in giving a dx of MS (RRMS or PPMS) to a person with a negative LP. In fact he goes on to say that a negative LP MS is a different disease to positive LP MS.

Take Care

Moyna x

I know I’m being cynical here and I’m a bit ashamed to admit that I think “we have proper MS” sometimes when I read the Everyday Living Forum and people bemoaning the fact that they ‘can only run a half marathon now’… (I know I’m exaggerating but you get my drift):Their MS should be in lower case!

I’m sure I’m not endearing myself to the other flavours but surely sometimes some of you must think like me that having ‘proper’ MS is a bit like the Monty Python sketch ‘Four Yorkshiremen’…
" You’re lucky to have a room! We 'ave to live in a corridor!

Stefos

Hi I think that you are quite hard which would you prefer?

RRMS at 24 - unpredictable disease , get up one morning cant see or walk. Side effects of drugs etc. Fear of the unknown when you are bringing up babies & young kids etc. Then at 45 develop SPMS with steady decline.

Or

Fine up until 45 then dx with PPMS and steady decline.

I dont have a PPMS dx yet but i am glad that I went through my 20s and 30s hassle free!

Moyna x

I think it is hard Stefos when we see people bemoaning the fact that they can’t run full marathon… yes… but I think that’s only a percentage of people with RRMS… and have to agree with Moyna… I’m very glad I didn’t have this damned desease when I was younger. I had my years of being well and energetic (admittedly with a few MS-like problems along the way but nothing that stopped my years of travelling, partying, raising a son etc etc).

And some people have very bad time with RRMS at very young age. I’m thinking of one person I know, 22 years old and already SPMS, full-time wheelie, incontinent, and all the other stuff. Poor kid.

Remembering that Monty Python sketch did give me a laugh though…

Pat x

Im with you both there all the way… I was diagnosed with PPMS 2 years ago, im now 42 and have lived my life: Been an active person, mountain biking, walking, getting out and about in Snowdonia, partying, clubbing, going out with my friends, holidays, working abroad, travelling the world etc… although i still to this day miss being able to the things i enjoy, im glad i had the experiences to do them in my early years. Been there done that bought the t-shirt so to speak.

Ive had a much better life than say a new born baby who has a crippling disorder and has never know fun, childhood or experienced what life has to offer. So im soooooooooooooooooooooo thankful for the opportunity that i was given in order to be able to do all the things that that newborn will never be able to.

Ive got my children, ive got my memories and ive got my friends… and ive now got PPMS ! Who cares… BRING IT ON !!!

I am soooooooo bloody lucky to have had the life ive had and i do not regreat a single thing :slight_smile: x

Great Dave, your glass is not just half full, but 100% full.

Moyna x