[SallyC]

Great post Msbluis. Thanks..

[MSbelle]

I have a few questions for anyone with PPMS.... how quickly has your disease progression been? How old were you when you first started having symptoms? What's your lesion load like? Do you have a lot of spinal lesions (and few brain lesions)? Had anyone heard anything about chemotherapy treating PPMS?

I am 30, was diagnosed just over a year ago with RRMS, though my disease looks a lot more like PPMS (though my neuro won't dx me with PP yet since he wants to try DMDs with the hope it's RR). I have a lot of spinal lesions (even one at L1!). I also have brain lesions. My progression has been fast. I'm not sure if that's typical of PPMS or not. But I don't have remissions and I have had a couple times where I've felt like things got worse sort of suddenly, I have never recovered from anything. Most of my days are worse than the previous one.

I'd really like to hear from others. Thanks in advance.

[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.

[SallyC]

http://multiplesclerosisnewstoday.co...linical-trial/