[SwanLake]

Hello all. I don't have PPMS, but my ex husband was just diagnosed. It's very hard to accept his diagnosis even though I know he has it. (10 years together and he is a big hypochondriac). I'm trying to do research on his illness.

May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?

In NO way am I being disrespectful. I'm just trying to understand this illness.

Thank you

[kicker]

Originally Posted by SwanLake

Hello all. I don't have PPMS, but my ex husband was just diagnosed. It's very hard to accept his diagnosis even though I know he has it. (10 years together and he is a big hypochondriac). I'm trying to do research on his illness.

May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?

In NO way am I being disrespectful. I'm just trying to understand this illness.

Thank you

You can't. There is no timeline, no telling. MS is very unpredictable. Somebody said "If you've seen one case of MS you've seen one case,"

[MSbelle]

Originally Posted by kicker

"If you've seen one case of MS you've seen one case,"

This is great! SO TRUE! I will use this saying from now on probably daily!

[msbluis]

"[May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?*"


That is a good and reasonable question.

I'm 60 and I've had PPMS for 20 years, so I feel I can answer based on my and other PP folks' experiences I've come across.

For MS to be classified as Primary Progressive, any weakening or loss of body function caused by MS never improves. In fact it will continue to progress to the point of total inability to function, if not completely, to the point of near uselessness.

For example, when I first began to have foot drop, after 4-6 weeks it progressed to foot drag, then to leg drag, then progressed to an inability to lift the foot and leg all together. I'd have to lift my leg into my car or up any stairs with my hands. It took about 2-2.5 years to completely lose all use of each appendage.

During that time the bladder quit working correctly and after trying several bladder meds like Oxybutenin, Detrol and Ditropan I did intermittant catheterisation for a few years until I could no longer transfer to a toilet, and now I've had a suprapubic indwelling catheter for 4 years.

My left arm is now useless and my right hand and arm operate at about 50% now. I can't write legibly any more, feeding myself is difficult and messy, but I can do it if someone cuts it up for me. The way I've progressed, I will be unable to feed myself any longer in 6-12 months.

No matter how reputable the neurologist or how promisingly hopeful the meds, (the CRABS, Novantrone, Tysabri, steroids and IV's), nothing has been proven yet to slow or stop progression in PPMS, not meds, not diet, not exercise. Odds are good that other's PPMS progresses something similarly.

If other folks MS has progressed much differently than mine, I think other people with PPMS would like to know.

[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