[SandyC]

I think this is wonderful. I am sure all those with PPMS will appreciate it very much. When will it be up and running?

[Koala77]

Thank you so much for your kind words Sal, but I personally don't have PPMS, I have RRMS.

This new thread was commenced in reply to a request for a place where those with PPMS could talk about the problems that they have. You'll find the post in Community & Forum Feedback: http://neurotalk.psychcentral.com/post591766-41.html

Originally Posted by SandyC

.... When will it be up and running?

It's up and running now Sandy. Please feel free to be the first poster to get it off the ground!

I do hope that the thread serves the purpose for which it was commenced.

[kicker]

Sally C, I think a place for Primary/Secondary MS would be great, as both (PPMS and SPMS) have their own concerns and questions. I know I can't always relate to RRMS stuff. I will PM you with info. on finding more specific SPMS info. We could also keep each other informed on upcoming (and rare, I think) clinical trials on PPMS and SPMS - I know Johns Hopkins is to start a Phase II or III trial of Fingolimod on PPMS. They have contacted me but being non-ambulatory, doubt I'll be included in trial. Oh well. (I really mean Poop!)

[kicker]

.

In 94, I was dizzy and tired but between have little kids and working was not too concerned. In 2002 told my PCP my worsening urine (urge incontinence) was a problem. She pooed-pooed me, attributing it to twin birth and age. I said I thought it was neurological. Having sent me to a neuro-opthamologist who found nothing, she sent me to a neuro after making me promise to stop looking for answers if he also found nothing. After Evoked Potenials, LP, MRiI- there was no question I had MS. And here I am. For 8 years It wasn't baD, FOR 2 YEARS AFTER DIANOSIS i THOUGHT "NOT TOO BAD, NOT DEVASTAting like I've read. (attack of the caps., sorry) But walking got worse, in 98 went in a chair in 09 stopped walking all together. I have no pain, but left side not very responsive. I have no tingling but can't walk either. BUT, we all differ in our Journey. I read of people still on plateaus after years and years or those who progress quickly. Who knows?

I do not agree with feeling PP is the worst. I hear stuff about RR I do not ever have to feel - I just don't walk.

My first neuro (now director of MS Clinic at Johns Hopkins) put RR on form, but now I read most Neuros do as Insurance will not ok DMDs to PPs and DX of RR gives patients a chance to try DMDs. From lesion size and amount (less in PP than RRs!!) and having never relapsed and anecdotal history, I self-DXed PP, confirmed by neuros after. 1st neuro became unavailable to me. I've done Rebif and Novantrone, 4-AP all with no success. Want to try LDN, which my current neuro will not prescribe but will use info you gave me to get it.

[TheSleeper]

PPMS myself, the only bad days I will have is when they end?

[Koala77]

Originally Posted by kicker

Sally C, I think a place for Primary/Secondary MS would be great, as both (PPMS and SPMS) have their own concerns and questions. ...

All fixed!

The thread name has been changed to include both PPMS and SPMS. I hope that fixes it.

[SallyC]

Well, I think PPMS is a bit more incidious than SPMS, which is an advancement of RRMS. We do have certain things in common, one being, that there is no effective DMD for either...and another being, that we don't have remittances and remissions.

[kicker]

I never remit, hope that being older (46 at DX) means I'll be gone or close to it if it gets really bad (!), Have never (never say never with MS, who knows what may happen), had blindness, no numbness, only when trying to use it pain/discomfort in left knee, no tingling, other than STM loss, no real cognitive losses other than "Too "much of anything can feel overwhelming.
I do have PPMS, am in a chair (Wheelchair Kamikaze (Marc) has influenced me, tend to "zoom" whenever I can. DH gets no end nervous.) But what I'm saying is yes, it sucks, but it could be worse. Anyone with PP try LDN? VCCSI and stem cell interest me. Fingolimod does too (but is it I like the name?)

[Aarcyn]

I do not know when my first lesion(s) began to appear. I basically ignored them thinking that it was just due to being flat footed as a child. I had to wear really ugly shoes but in my 20's, I wore high heels and short skirts!

It started in my early 40's but again, I ignored it and was not diagnosed until it progressed from just numb and cold in my feet to numbness creeping up to my abdomen.

Dispensing with all the MRI details, I will never forget the day when I was called into the PCP office and told I had MS. I did not even know what that meant. There was not even a neurologist to be able to see (note: I have GOOD insurance, or that is what I thought) for 3 months. PCP told me not to go to the internet, lots of false information.

Like I was going to not head straight to my computer!!! First thing I read said "no cure and hopeless." No wonder the PCP told me not to look.

I sent an e-mail to one of my brothers, a neurologist in San Francisco, to tell him my dx. He called immediately telling me to go to the ER. A neurologist is required to be in the hospital.

I did not want to go, the PCP had let me go home and going to the ER would be extreme. DB insisted on calling PCP and called me to say go to ER. I did.

After lots of tests and steroids, MS dx confirmed. Dx'ed as RR for first year to see if there is a remission of sx. There was no remission of sx ever, even before dx.

So, a year later with the location of lesions plus no remissions and age of sx's, PPMS dx.

I go to Mayo right now, as long as insurance will pay for the doctors there. Everyone is very agreeable and I have tried a bunch of medicines. I get whatever I want but there are no trials going on right now with Mayo.

This is the short version of my PPMS!! No remissions, just increasing paralysis but slow. Pain factor is about the same.

Mentally a bit slower but not much to be a concern. Not everything is about MS.

[kicker]

This type of MS is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPMS differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.
*******
Sadly, this is the most positive thing I've read. PP is not labeled the wrse that can happen. I was 46 at diagnosis, I'd had a couple of adventures.

Re: CCSVI sounds great but not PP-friendly Any thoughts? (no, Bufflo too far away for me, anyone going to trial testing there?) They are just looking at veins, no shunts/shents