Chris, the difference between RRMS and PPMS is very clear-cut. If a patient has ever exhibited relapses and remissions, then they quite simply cannot have PPMS. If a patient experiences continued progression in the complete absence of relapses and remissions, then they likely have PPMS, or some other progressive degenerative neurologic disease.

Most neuros won't classify a new patient as PPMS for a least a year, waiting to see if the patient ever goes into remission. If they do go into remission, then PPMS can be scratched off the list of possible diagnoses.

There can be confusion between RRMS and SPMS, because often people classified as SPMS still do suffer the occasional relapse. This, I suspect, is also the reason the Johns Hopkins doctors are considering trying Revimmune on SPMS patients. Some of them might still have enough inflammatory disease evident to make the treatment useful. Incidentally, a patient having black holes does not necessarily lack inflammation. The black holes are indicative of permanent damage to the nervous system, not an overall absence of inflammation.

There's also a form of the disease called PRMS (primary relapsing multiple sclerosis) that is quite rare, in which patients suffer continued progression and marked relapses and remissions. This form of the disease is generally very aggressive.

I wholeheartedly agree with you that anybody interested in Revimmune should have the Johns Hopkins folks take a look at their records. Don't let anything you read on any of these boards be the deciding factor in your choices of treatment. Nobody here is a doctor, we're all just patients trying to fight through this damn thing. Educate yourself tirelessly, be your own best advocate, and find a doctor you trust. The stakes are too high to go at it any other way.

That doesn't really say too much, except that you most likely have this thing they call MS.

As far as the types of MS, Marc is right on the money with everything he's said, in both postings. There does tend to be a greater degree of spinal cord abnormality with PPMS, and in fact it may be THAT the disease does a fair bit of damage to the cord (for whatever reasons) that ultimately helps define the disease as PPMS. Spinal cord damage is often severe and permanent.

According to this article, "researchers have identified four different subtypes of MS, and each is thought to be caused by a different autoimmune process. As a result, developing a treatment that effectively targets all types of MS has been challenging", according to Douglas Kerr, M.D., Ph.D, associate professor of neurology at the Johns Hopkins University School of Medicine.

"Seeking an alternative way to use the drug, Kerr and his colleagues reasoned that HiCy might clear out the majority of a patient's immune system in one fell swoop, then allow it to "reboot," giving nerve cells a fresh start and an opportunity to repair themselves. In the current study, nine MS patients got a total single infusion of 200 milligrams per kilogram of cyclophosphamide intravenously over four days, a dose several times higher than that given in pulsed regimens but significantly lower than the total amount usually given patients over time.

Reporting in the June 9 Archives of Neurology, the Johns Hopkins team said the disease appeared to reverse course for seven of the nine patients over two years following treatments.

Kerr cautions that the "reboot" phenomenon didn't work in all the patients. Two years after treatment, MRI images showed that the disease had reactivated in about half the study participants, suggesting that their renewed ability may not be permanent."

http://www.medicalnewstoday.com/articles/110709.php

I believe the "4 different subtypes of MS" that Kerr is referring to might be according to the patterns that the group working with Claudia Lucchinetti, MD, Associate Professor of Neurology at the Mayo Clinic has uncovered with The MS Lesion Project.

"Their initial study, based on a large pathology sample of patients with multiple sclerosis (32 autopsies, 51 biopsies) revealed “profound heterogeneity in the immunopathological appearance of active multiple sclerosis lesions.”

The group identified four different patterns, based on:

1) distribution of myelin protein loss,
2) plaque geography,
3) extent and pattern of oligodendrocyte destruction, and
4) evidence for immunoglobulin G and complement activation."

There's lots more information in the following link:

http://www.neurologyreviews.com/aug0..._mslesion.html

Cherie

I'm just curious reading through this thread....Were you classified wrong?

Not trusting the neurology field because you've only met one staff-member proactively trying to change things??? I'm baffled!

I agree we should go to dr's we trust, but to not trust because your dr's aren't out there 'fighting the MS fight' tooth and nail, well....seems a little silly to me, but that's just my humble opinion.

I'm sorry that you feel the dr's aren't proactive enough in the hunt for a MS cure. It's a frustrating disease! It's tiring to feel like we are going it alone, this I know!

*******

I understand wanting proactive - It's a mix of frustration and wishful thinking for me. IF I got the right, smart, proactive MSNeurologist, every thing would be different. After 4 neurologists and not much being done for me (two at JH, 1 at MS Center UMM, 1 general neurologist at beginning (didn't help past DX at all)) I think maybe it's not them, maybe me and my PPMS are stacking the odds against me. I will not stop being aware of new advances and theories in the MS field, but while always hopeful, I am wary.

I had a neurologist (who was not right for me in specialty, so saw briefly) say "I can't cure you, so I'll entertain you" and then did magic tricks. I liked him, for awhile I was entertained, liked it better than the neauros who can't do much but don't entertain. After Dr. Calabresi (JH Head of MS Center) pricked me with sharp thing which I felt every time, he offered to let me kick him in revenge. No wonder I liked him so much.(No, I didn't kick him) A neurologist willing to show a little of himself is hard to find.

I hope they figure out some of this puzzle before it's too late for me, but being realistic, know it may not play out like that.

No my spine showed all the damage at first. I had nothing in my brain.

I kept getting worse and worse and then th lesions finally started to show in the brain. I was physically PPMS, clinically RRMS.

I have had two nuero's tell me I had PPMS, one tell me I was SPMS, and then Dr. Bowling finally said I was RRMS. I stayed w/ Bowling because it sounded better.

I don't think there is a big difference in how bad MS sucks for everyone eventually. Just different degree's.

Let's call it like this....inflammatory MS and non inflammatory MS

I assure you all if you went to 10 neuro's 5 times you would be RRMS, 4 times SPMS, and one neuro will call it PPMS. ( OF course this doesn't apply to all)[/QUOTE]3 out of3 (and me, not that I told tem) say PPMS. Have you had problems with different neurolgists DX ing different things? Some neurologists just don't really know much, don't be swayed by their inaccuracy. You know you best. What was your most frequent diagnosis? Do you relapse, ordo you think you fit in SPMS or PP ?

Chris, just a FYI:

Many people with MS can have spinal lesions and not be PP, I am one of them. I am RR, have had the relapses (6) to prove it.

I have numerous cervical spine lesions, that's where my MS started. I was dx'd in 1986, as of late 2005 I have 2 brain lesions and a curved black line ( 2 or 3 lesions in a row where there is permanent axon damage).

I am still ambulatory, have helped raise our 2 children (16 & 18) who were born after my dx. I have a wonderful neuro, he is the same one who dx'd me years ago.

I am not a risk taker with this disease. In my case, I am concerned about using any treatment and it causing more problems than it would solve.

I will take my chances with this disease and the natural course.

Will HiCy be a cure for some? Maybe. Could HiCy be just like any of the DMDs - a temporary reprieve? A slowing down of disease progression? Possibly.

I will follow the stories of those who use HiCy and hold my opinion until more is known.

thank you for that, Marc... it explains a lot.

I'm definitely SPMS, and occasionally, every few years, I have a noticeable flare.... which always CONFUSES me, because I thought SPMS'ers didn't really HAVE flares.

I've had MS for 20 years, and was switched from RRMS to SPMS about 6 years ago.

amen, Snoopy.

mine are mainly in the lumbar area, with some cervical.

I think the reason it took so *long* for me to GET my dx was because they were looking in the wrong place... between 1988 and 1992... they were only doing BRAIN MRIs on me, and finding nada... (except for the ON)

it wasn't until one smart doctor (Dr, Kobrin, may he rest in peace, a genius, and a truly kind and patient man) ordered FULL MRIs of my entire spine, that I finally got my dx of MS.

for the first decade of my MS, the vast majority of my lesions were in my spine.

and that's STILL where most of mine are now...

Like Snoopy, I have spinal lesions as well as brain lesions. The spinal lesion is what got me dx'd in 2001. I am RRMS with 3-4 relapses a year, no that is not a typo.

I am still ambulatory, work part time, which is my choice, but when I have a relapse I am completely down. As my neuro puts it, I am either 100% or zero.

We all make our choices for treatment. My choice right now is to be a lab rat for Tovaxin....who knows what the future holds.