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Understanding PPMS?

Quick question for the group (it might be better for a neuro, but I want to see what everyone here says): For PPMS, do you keep getting new lesions? Or do you just lose mobility based on the ones you have? I have also heard very little inflammation in PPMS or SPMS. What do you think? Thanks.

As I understand it, you can develop new lesions which may cause new symptoms to appear and may affect not just mobility but other parts of the body and other functions.

Have you looked at this page? http://www.mssociety.org.uk/what-is-ms/types-of-ms/primary-progressive-ppms It’s a good summary and does say that people with PPMS can experience many of the same symptoms as people with RRMS.

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Sorry me no know but then me is as daft as a brush and this is way to high above my pay level.I have had PPMS for over twenty years and my body has slowly shut down and I am writing this sitting in a wheelchair where as twenty years ago I was climbing ladders and running around with gay abandon. I have recently had a CT scan the second one in twenty years so when I see the results maybe I can answer your question until then I will continue being a grumpy old man.

Don

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LOL! Hey Don. I have read alot of your posts. I know it sounds like you have hard times, but doesnt sound like you are too grumpy. You have had it over 20 years? I am 37 and in the middle of a dx. Might be PPMS. Only time will tell. My initial symptoms which started 4 months ago are tingly hands (they fall asleep all the time during night), lightheadness, an always sore and tight left knee, and a few eye problems (light sensitivity, and new onset of floaters in both eyes). So far I have had a brainstem and brain MRI (both of which are negative). My neuro says it could be MS, but I have to go back in two months, at which time she said she will order a spine MRI if anything gets worse. I am thinking it could be PPMS, as nothing has gotten better in that time. If you dont mind me asking, what do you think?

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Hi J’er, you can get new lesions… but more importantly, the amount of lesions is not what matters… it’s where they are and how much they are affecting the nervous system. So someone with relatively few lesions can be more disabled than someone with more lesions.

As with everything MS, it’s not straightforward.

Pat xx

The voice of reason Pat, what would we do without you? I always think (no sniggers I do, occasionally) that we are a resilient and without being big headed brilliant group. Did I mention ‘cool’ into the bargain

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Yes you can get lesions if you are progressive MS. In fact, researchers found some time ago that people with MS have two processes going on: inflammation and neurodegeneration. Even those who are relapsing remitting also get neurodegeneration (loss of nerves/brain atrophy). The idea that you first have inflammation and lesions and then neurodegeneration takes over has been discredited. According to researchers at the Rocky Mountain MS Center in Colorado during the relapsing remitting stage the brain works hard to re-route various functions, it’s when the brain is unable to repair and re-route then the MS becomes progressive, so it’s to do with how much capacity the brain has to repair the damage. Also, apparently 90% of inflammation going on is asymptomatic, ie the person does not experience any symptoms. People who had MRIs monthly had a lot of lesions but often no symptoms.

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Hi J’er,

I am with Don no idea whatsoever about lesions. I spend my day worrying about getting from A to B without falling over, the science of it goes way over my head.

Sorry if that makes me sound a bit thick but I like to spend my energy on things I can do something about.

i hope you get answers soon, it’s horrible not knowing what’s wrong with you.

Take care

Mags xx

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Hi J’er,

I know I have lesions, I know I will get more lesions and I know there’s not a single thing I can do about it!

So like Don and Mags, I try to spend my time concentrating on what I can do…making the most of each day!

Hope you can get more information from your neuro soon,

Take care,

Nina x

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J’er All I can say is I have a friend diagnosed with MS twenty years ago who ended up in a wheelchair and unable to stand who is now walking and running and lives in Spain most of the year. We are all different PPMS is different from RRMS your symptoms could be a flare up and in a few month time you be wondering what the heck caused that. But on the other hand … what I am trying to say is suck it and see there is no hard and fast with MS. I and I expect if all of the others on this board knew what was is store …YUK thats a scary thought but where is the fun in that? MS is an adventure we never know what the next day is going to bring, I treat it as fun… well most of the time I try too.

Keep on trucking

My best bit of advice I was ever given was:-you can have MS or MS can have you! and I would advise the former.

I have lived by those few words for over twenty years, I laugh because the alternative is crying

Don

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