nold 23/10/14
Last reply 3 weeks ago
How fast is the progression in ppms?

Hi, I’m new to this site. I was diagnosed in April 2014 and although the doctors say I’m RRMS, I’m still unsure about this. The reason for my doubts is quite simple: I never had relapses or remissions.
I had symptoms since 2006 at least and my legs, hands and my fatigue seem to get worse slowly but gradually. The main reason for RRMS they told me was: “If I had ppms for eight years, my condition would be much worse”.
Indeed, I’m doing well. My legs feel heavy, I have some spasticity them, but in September 2014 I did a 11km hike without problems.

So I would be happy if someone could share his experiences. How long were you able to walk longer distances ? Are there other ppmsers who are having such a “slow” progress ?

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tabbycat
3 years ago

Hi @nold, you sound very like me and I also am diagnosised as RRMS, though my symptoms – numbness, some pain, tingling, leg weakness, spascitity do not go away. I have also worried that it might be PP because of this, but have been similarly reassured by docs. I think I have had MS for a least 10 years, so my progression has been very slow, for which I am very greateful.
It is a weird disease and every one is different, so keep hiking, keep active and try to live your life as you want to.


qaatsi03
3 years ago

Hi, @tabbycat, @nold, PPMS is notoriously difficult to diagnose, I’m no neuro so I’ll refer you to the link below:
http://multiple-sclerosis-research.blogspot.com/2014/09/ms-day-progression.html,

I was originally diagnosed with PPms, but then that was changed to SPms, so my two days of flu and my week of slurred speech and limp arm were upgraded to relapses, these episodes were 20 years apart 🙂


tabbycat
3 years ago

Thanks for that link. I think after watching that it sounds like I do have progressive, which is depressing, but they are just labels, as the doctor explains and the good news is that more dmds are being prescribed for this stage too and there are more to come.


graham100
3 years ago

Hi guys, I also DX rrms 2012 I now can’t walk 5yds without crutches, slim 11st quit fit still. So I also think rrms??


nold
3 years ago

Thanks for the responses, really interesting to get some feedback from other people.


dr-danielle
3 weeks ago

I was recently diagnosed with RRMS and I’m pretty sure it’s PPMS, but I’ll have a chat with the docs next week. The whole thing started with Optic Neuritis (the soreness and cloudy vision never went away) and now terrible fatigue and soreness in my hips (??) and kind of a really tired feeling in my lower legs. Seems to be moving into different realms more than I’d like. Part of me wonders if maybe I’m crazy, but I have to say the pain is pretty real.

According to the research I did, PPMS creates more lesions on the spine than the brain, and it’s diagnosed a little later. The “relapses” don’t seem to come and go as much, more like they just come and don’t really go. There’s more of an issue in the lower body with PPMS…or so it seems. Who knows?

I know it’s been said a million times, but the fact it’s different for everyone makes it very difficult.


lookey
3 weeks ago

I’ve just been diagnosed with PPMS and I have no lesions on my spine just on my brain. It’s taken 3 years to diagnose and I’ve have symptoms for 7 years. Constant pins and needles, pain along with other things. Mainly in left leg, it’s only got worse in the last 18 months, with the pain being horrendous.

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