The diagnosis of PPMS has nothing to do with the speed of disability onset. It only describes the course of the disease, which is only progressive, without any relapses or remissions. This is different than SPMS, as SPMS by definition is preceded by a patient going through an RRMS stage. PPMS and SPMS look very similar, but PPMS patients are progressive from the outset, and SPMS patients go through an extended period of relapses and remissions before the disease becomes strictly progressive.

As far as the speed of that progression goes, it varies widely from patient to patient. Some patients diagnosed with PPMS have very slow progression, and can remain quite active for many, many years. Others are hit extremely hard by the disease, and may be bedridden within a year or two. Most fall somewhere in the middle.

The most unfortunate aspect of the diagnosis of PPMS is the lack of effective treatments. Many treatments have been tried, and their efficacy varies from patient to patient, but none have been found to be very effective.

Hopefully, with continued research into neuroregeneration and neuroprotection, we will see therapies developed that can be applied to progressive patients sometime in the foreseeable future. Stem cells offer great hope, and several trials using stem cells for neuro repair are currently underway.

I have Primary Progressive MS. I have never had an exacerbation. My syptoms never go away, they just worsen over time.
My symptoms seem to worsen all at once and then for a long period of time I have no worsening at all.

I have been on what my neurologist calls a "plateau" for almost two years. My symptoms seem to have remained at the same intensity for that period of time. I keep my fingers crossed that I remain on this plateau for a good long while.

With PPMS the doctors only treat the symptoms. I take Flexeril and Neurontin and sublingual B12.

Apparently, to add to my MS, I have a B12 deficiency. That causes its own set of problems including a peripheral neuropathy.

I am PPMS - good news was I was DXed at 46. Bad news, well.....

In 94 stared feeling unbalanced, started to have pee issues. After walking 2 miles got tired, had to sit. 2000 - packed up my house, moved, unpacked., kept remarking MD (new home) really crooked. 2002, DXed after complaining about p issue. 2002 Canadian crutcheds to walker to now, 2208, can stand (for very short periods) use power chair. Progression differs in everyone.

[QUOTE=kicker;288549] 2006 Canadian crutches

Thank you all for your answers. I am still very active as my girls are 11 and 16. I had a hard time this weekend as we did a lot of walking. Other than that, I don't have a whole lot of "pain" just a lot of discomfort. The neuro thinks I am fairly slow in progressing, which is great. I am thinking of trying some Yoga as I have heard this can help build muscle strength without making me exhausted. I only take Aleve on really bad days and hope I can continue for several more years without a lot of meds. B12 was in normal range.

Has anyone been to Shepherd Hospital in Atlanta and/or Dr. Thacker? I hear he sees alot of PPMS patients. I am thinking of heading down to see him later this year.

Hello there...

I also have PPMS, recently diagnosed (Mar 08) but w/ long standing symptoms/issues (first neuro visit Jan 06). I have balance problems, dizziness, bladder problems etc but the thing that brought me to the neuro doctor first were problems with my left arm (tingling, burning, buzzing...weird stuff) then - cognitive issues just kind of all ganged up on me! Cognitive issues...including getting lost, sounding drunk, never having the right words to complete really compelling thoughts etc.

The MS specialist (who I expected would blow me off or say it was nothing but that I should increase my anti depressants and carry on) --- said --- I believe that you not only have MS, but that you have PPMS....and that you have marked brain atrophy which has increased quite alot in just a year. I was/am flabbergasted - I expected to be sent packing. It still seems unreal in many ways.

Anyway, I don't want this to get too long - I just want to offer you hope. I am active duty Air Force, still mobile, still able to exercise (but not run). My PPMS has not drastically affected my mobility - but every day I do the roll call to see if everything is still working as it should. I have cognitive issues but most of the time they are pretty darn funny....

I hope that you find peace with all these kind folks, they sure make our journey less lonely. Our experiences strengthen each other - we know that we are not alone.