"[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.