[MSbelle]

I guess there's no answer to whether fast or slow progression is normal with PPMS because it could go either way.
How on Earth do you cope with this diagnosis? How long did it take for you to get the diagnosis? Did you know before that it was PP but first dx with RR?

[SallyC]

Hi MSBelle. Most PWMS DXed with RRMS, to be eligible for the meds.
Then you wait 6MO to a Year, to see how it progresses. Steady prog-
ression with no pronounced remissions, is usually then DX as PPMS.

SPMS usually happens, when RRMS stops having reg attacks and your
MS slowly progresses, usually reaching a plateau and stays there.
That is where I am now, with LDN, hopefully, keeping me there.

[Lumia_black]

Originally Posted by SallyC

Hi MSBelle. Most PWMS DXed with RRMS, to be eligible for the meds.
Then you wait 6MO to a Year, to see how it progresses. Steady prog-
ression with no pronounced remissions, is usually then DX as PPMS.

SPMS usually happens, when RRMS stops having reg attacks and your
MS slowly progresses, usually reaching a plateau and stays there.
That is where I am now, with LDN, hopefully, keeping me there.

Yeah after 13 years of being RR it seems my remissions aren't quite full recovery anymore. I am getting lasting problems that aren't going away such as walking is significantly worse than just two years ago and the bladder urgency(leaks) are way worse and don't go away, even with any sort of meds. I believe I am entering or have had entered the secondary stage, but neuro insist the time intervals aren't pointing that way just yet....pffftttt it sure as hell feels like it is. I just turned 40 so I guess natural aging with MS makes things a little harder....I dunno...it all just blows

[kicker]

I am 59, dxed with PPMS in 2002. For years I thought despite things I read "This isn't so devastating" Then boom, boom, boom. Foot drag, Canadian crutches, walker, power chair, pain and discomfort, on various meds for incontinence, but never a spasm. Now, no pain, left side does not work but can feel a hair, ib a chair but seem plateaued. WTF!?? Always waiting for the other shoe to drop. The years before dx and a few years before and after were wham bam. But now never nap, take Amantadin and nothing else, No meds (Oxybutin, etc.),dry mouth seems better. Don't know what to expect. I play it day by day.I still can't walk and pee every 3 hours but sleep through night.

[kicker]

Can self-toilet with one leg pivot and grab bar. Yes, it is sad I have that to be proud of.

[kicker]

Time to buy a new chair. Since I am 24/7 in a power chair, this is important (and very $$$!)

Any advice. Do know I want dependable (been pleased by my Invacare TDX-SP), tilt mechanism. flip up footrest (must have for self-toileting, air,gel cushion. Any thoughts? Experiences? Can't get on a scooter.

[agate]

Originally Posted by kicker

Time to buy a new chair. Since I am 24/7 in a power chair, this is important (and very $$$!)

Any advice. Do know I want dependable (been pleased by my Invacare TDX-SP), tilt mechanism. flip up footrest (must have for self-toileting, air,gel cushion. Any thoughts? Experiences? Can't get on a scooter.

Why not get another Invacare TDX-SP? Looks to me as if it has a flip up footrest but I did find this announcement on the Webpage:

Invacare has entered into a consent decree of injunction with the FDA that may limit our ability to provide this product.

Not sure what that means but is there a reason why you need to get a new chair, kicker?

I've been lucky enough not to need a power chair but have a manual one and have tried a few power chairs. I haven't had enough experience with them to know anything much. I'd be inclined to go for the lightest weight chair I could find but that might mean a less stable chair, and that wouldn't be safe.

[msbluis]

Hi Kicker,
I would consider your halt in progression something to be VERY pleased about. Let's hope it's permanent!

Have you met with your neuro and asked him or her about their knowledge of progression stopping?

We all wish the best for you ...maybe you could clone your blood/nervous system and share your unique good fortune!

Wishing you the best!

[kicker]

My heart is broken. My neuro left me. Well, not just me, the hospital he was with. He's gone into research, I told him to call me if he finds a cure.

We had years together but doctors leave (like they have their own lives or something!). If a problem came up he answered my e-mail within 24 hours, usually sooner. He never pretended he was going to cure me of PP but helped any problems I got. I have a new doctor, sure she's very capable (from NIH, now with Johns Hopkins (I'm very close to Baltimore) but I'll be 60 this year, I don't see much happening. I'm either plateauing or something, swear I pee less and (knock wood) haven't had UTI's in years. Used to get them a lot, had one I called UTI from Hell. Now although in a chair, not always sure if it's age or MS affecting me. But who knows what will happen tomorrow? Always waiting for the other shoe to drop.

[kicker]

I know MS put me in a chair but other stuff, well I don't know what causes it. Friends my age are getting stuff and don't have MS.