[chrishadms]

I have seen a good deal of confusion about what exactly these sub types mean and what they are. How can one person who keeps getting worse be classified as RRMS, where someone with gaping black holes and are still walking are considered PPMS?

I was actually explained something amazing about this by a neurologist that clarified it very well for me.

These sub sets were all developed for clinical trials so a person could be placed appropriately based on how bad an individual was. It was all considered MS until the government said we need something more exact.

Now unfortunately because the government stuck it's nose in it is viewed different. Now rather than everyone with MS being treated, they get to divide folks up into groups.

I firmly believe it is why one neuro woul tell you I was RRMS, another would say I had SPMS, yet another would say I was PPMS from the onset.

To doctors it is MS.

[kicker]

I don't agree with you. These are my thoughts. (disclaimer - I am not a doctor, nor I play one on TV

I feel some neurologists are not fully informed about MS. I believe in only seeing a speacilized MS Neurologist, but that's me and these options exist close to me. I am definately PP, I have never relapsed or regressed and classification is based on how your MS presents itself, not serviarty. Every PPMSer differs from another is serverity, I'm in a wheelchair , some PPs walk and work. RR is relapsing and remitting. Like the name implies there are distinct times of relapses - flares followed in days, months, years (again, RRs not all the same.) of return to pretty normal, although some SXs might stay. If progression remains RRs can become SP. PPs are PP, RR become SPs never RRs (this is this from the beginning), PRs are a pretty rare type of MS There are relapses, no remittances, just progression of SXs with every relapse. Every one can hit a plateu.

I knew I was PP and told doctor, who knew it also based on my anecdotal rehash of Disease course. PP tends to have a later onset and lesion load appears different from RR in Quality and location, but MS never follows all the rules so things are different for all. My MS may not be like another PPers.

It is a common belief PP is the "worse" (all MS stinks!!)yet some PPers do better than others. PP is said to have a later onset, yet some PPers begin much younger.

RRs seem to repond to DMDs, PPers don't. RR seems to have inflamation involved, PPers not, which excludes them from Revimmune which is based on inflamation targeting.

There is currently no drugs for PP. Some do not think PP and RR are the same at. We always welcome RRers to visit the PPMS Social groups if they wish to explorre this subject.

I'm not editing for spelling errors so here goes!!

[SallyC]

To GOOD Doctors, it's MS....to the others, it's Money.

Thanks for this, Chris..

[kicker]

I don't agree with you. These are my thoughts. (disclaimer - I am not a doctor, nor I play one on TV

I feel some neurologists are not fully informed about MS. I believe in only seeing a speacilized MS Neurologist, but that's me and these options exist close to me. I am definately PP, I have never relapsed or regressed and classification is based on how your MS presents itself, not serverity. Every PPMSer differs from another is serverity, I'm in a wheelchair and don't work, some PPs walk and work. RR is relapsing and remitting. Like the name implies there are distinct times of relapses - flares followed in days, months, years (again, RRs not all the same.) of return to pretty normal, although some SXs might stay. If progression remains, RRs can become SP. PPs are PP, RR become SPs never PPs (this is this from the beginning), PRs are a pretty rare type of MS There are relapses, no remittances, just progression of SXs with every relapse. Everyone can hit a plateu. (I did for 12 years! And thought "this isn't so bad." HA!)

I knew I was PP and told doctor, who knew it also based on my anecdotal rehash of Disease course. PP tends to have a later onset and lesion load appears different from RR in Quality and location, but MS never follows all the rules so things are different for all. My MS may not be like another PPers.

It is a common belief PP is the "worse" (all MS stinks!!)yet some PPers do better than others inculding RRers. PP is said to have a later onset, yet some PPers begin much younger.

Some RRs seem to repond to DMDs, PPers don't. RR seems to have inflamation involved, PPers not, which excludes them from Revimmune which is based on inflamation targeting.

There is currently no drugs for PP. Some do not think PP and RR are the same at. We always welcome RRers to visit the PPMS Social groups if they wish to explorre this subject.

I'm not editing for spelling errors so here goes!! Again, I think I know what I'm talking about, maybe I don't.

[kicker]

My 1st neuro DXed me as RR so Insurance company would pay to let me try DMDs. Nothing worked. Most MS neurologists hesitate to label a patient PP until they're gotten an opportunity to try DMDs

[lady_express_44]

I'm not even sure we all have the exact same disease or variant . . . but for now, I basically agree with Kicker. Our myelin is being stripped, but how, why or what the cure might be may be quite different.

Cherie

[chrishadms]

Well there is no need to agree with me. I had it explained to me by the head of neurology from some hospital in British Columbia and had it confirmed by a doctor at Johns Hopkins.

I just post the facts and nothing but the facts. I don't make money from this.

[0357]

I find many, many neuro's now say RRMS to all to give them an opportunity with ABCR drugs because of insurance companies. Not sure if I agree with this...

[kicker]

HMMM...And I was diagnosed by the head of the MS Center (he is also a MS neorologist )at John Hopkins. Sorry, I've had regular neurologists and doctors say and think things about MS that makes me think they shouldn't try getting involved outside their norm.

And 0357 is correct in my experience. Many neorolgists will not say or put down PP so patient can have access to DMD drugs as insurance companies will not pay PPMSers when no FDA approved drug is available for PPs.

But just IMHO and what I think are facts and experience and research..

[lady_express_44]

Originally Posted by chrishadms

I just post the facts and nothing but the facts. I don't make money from this.

The facts, at least according to "somebody".

Up until recently, they figured Devic's was just a variant of MS too . . . but they've recently discovered that there is a different disease process going on, which happens to strip the myelin too.

Originally Posted by chrishadms

It was all considered MS until the government said we need something more exact.

I'm curious why you think the government would care one way or another?

Cherie