RR,SP,orPP...who, what, when....
 

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.

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!!

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

Thanks for this, Chris..:)

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.

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

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

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.

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..

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.

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

Cherie

www.clinicaltrials.gov

FDA

These two lines should explain it all. It sucks I know.

I was diag'd by MR. MS in the Rocky Mountain region in Colorado Dr. Bowling. Aside from him telling me I had MS and telling me I was getting worse he was worthless.

If you were diag'd by someone affiliated with JH, Why didn't you ask Dr. Kerr for the HiCy treatment? He is the one doing it to his patients! I think I good deal of the MS population really doesn't get what exactly HiCy is.

I am meeting with him and the investors for HiCy with JH on the 15th and I can ask him for you but the HIPA might prevent much more.

Nah . . .

They just took the more progressive types out of the trials so that no one would know for sure if these drugs are working or not. ;)

Cherie

IMHO we are all looking for/wanting the same thing...a cure!

I feel I have a good doctor (yes he is an MS specialist) and I trust him.

While I do appreciate others concern for me, and I do try to keep up with the latest experiments/treatments, until there is solid widespread evidence of any new treatment of any kind I will think twice before putting myself, physically and emotionally, through the courses of something that is virtually unknown.

My symptoms aren't like everyone else's and the treatment they are recieving may not do a darn thing to help me. But hey, that's just me.

Chris I do wish you the best with the HiCy and while you're at the meeting, maybe you could ask the investors if they could make this treatment available to everyone at a low cost, regardless of insurance...so that we all can benefit from it. ;)

Hello Chris.

I have been reading this thread as well as other information about HiCy. I really hope it's the miracle many are looking for.

However, I am a skeptic. I have had this disease a very long time, I had already been diagnosed several years before there were any treatments for MS. I have followed, sometimes inconsistantly, new drugs and how others do on them.

I am not interested in using any of the current treatments for MS. I believe before there is a consistantly reliable treatment for MS the CAUSE needs to be found otherwise we will continue to see different results for different patients - some treatments will to work for some but not others.

There can be a wide range in each of the "types." And, some might even be different diseases grouped into MS - only time and research will tell.

As for Dr. Bowling: I have never been a patient of Dr. Bowling but you are the first person I have ever run across that has had anything negative to say about him.

He is a great doctor. He knows his stuff.

I just know when I was shaking like a leaf and told him LDN helped me he said it didn't. I stopped taking it and started to shake. Started taking LDN and stopped shaking. Told him again and he said it didn't work. There wasn't any clinical data to support it. Ummmm...it's LDN....duh!!!!

I had active lesions twice with 2 separate MRI's and never took one steroid.

There are 2 kinds of neuro's. The ones who keep you where you are, and those who really listen and look for a answer.

He is a good doctor. I just didn't receive any treatment.

HiCy is Cytoxin, and currently they find it works best on MSers with inflamed or enhanced lesions. As a PPer I don't show inflamation, Dr. Kerr and Johns Hopkins are currently not including PPMSers in Revimmune. I'd be not considered a good candidate. Red Penguin (I think that's the name) is RR, and recently had Revimmune and feels it's helping. I am jealous I can't have it.

Doctors, even MS specialists, can try, but it's the individuals response to treatment and the MS. I don't believe trying hard or magical thinking can work. We hear about success, rarely the failures. Good luck at Hopkins.

Dr. Kerr recently wrote in a forward in a book about MS. Anyone know what?

Chris, I'm thrilled that Revimmune had such terrific results for you. It's fantastic that an effective treatment has finally been found for some who suffer from this disease.

However, Revimmune will not be the answer for all patients. I've spoken with the doctors at Johns Hopkins, and their feeling is that patients not showing signs of active inflammation most likely will not benefit from the treatment. That means the treatment will not be effective for almost anybody suffering from from PPMS (as I am), and most who suffer from SPMS.

As far as there being not much difference between the different disease subtypes, that may hold true for RRMS and SPMS, which together form something of a continuum, but PPMS is clearly a different entity. I have a email from Dr. Peter Calabresi, the head of the Johns Hopkins MS Center, in which he states that "primary progressive MS is a terrible terrible problem".

The pathology of PPMS differs significantly than that of the relapsing forms of the disease. Lesion load and location are significantly different (patients generally exhibit much fewer lesions, and lesions of the spine are far more prevalent) and males and females are stricken in equal numbers by PPMS (while for RRMS and SPMS the ratio is at least 3:1 females to males). Furthermore, PPMS patients are much more likely to have negative lumbar puncture results, and their disease more often takes an aggressive course.

Here's a study that looked at the six-year results of Hematopoetic Stem Cell Transplantation on progressive MS patients. The results are less than stellar. Keep in mind, that Revimmune and HSCT both achieve the same end result, a rebooting of the immune system, the difference being that Revimmune does not require the transplantation of autologous stem cells.

The majority of the patients studied in this abstract were primary progressive and secondary progressive. The results really were not that great, as 16 of the 26 patients worsened, and only 4 saw improvement, as measured by EDSS score.

The conclusions are that "This potent anti-inflammatory treatment might be most effective in the earlier, more inflammatory relapsing stage of MS. The continued worsening of some patients, in the absence of MRI or clinical exacerbations, suggests that the treatment may be more successful in earlier stages of the disease."

http://www.abstracts2view.com/aan200...AAN08L_P02.162

One would expect to see much the same results for progressive patients undergoing the Revimmune process. I fervently wish that Revimmune were effective on primary progressive patients, I'd be first in line for the treatment. I spoke with the Revimmune people back in February, and after reviewing my records they told me I was not an acceptable candidate for the treatment. Dr. Calabresi later reiterated that opinion.

Hopefully, some SPMS patients will find benefit. The last I heard was that they were pushing back the SPMS trial until winter. I guess only time will tell...

Thanks Marc. I always appreciate your informed opinions on such matters.:)

See and I had more lesions in my spine than in my brain for the first three years I had MS.

What does that say?

I agree they are not too sure about the inflammation and by default the earlier the disease is caught the better.

PPMS is a bad one and I agree this may not be for those folks. I just hate when people like me who had lesions all over their head are told they are PPMS by one neuro and another says it's RRMS.

What harm does it do to allow JH to decide what you are? SPMS doesn't necessarily show active inflammation either. In fact I know of someone with some big black holes who just had this done.

I guess I just don't trust what any neuro's say anymore because I have only met one staff pro actively trying to fix things.

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)

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! :hug:

*******

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. :rolleyes:

Chris, most of my bad lesions are in the spine too, and I am still RRMS 17+ yrs into this disease process. However, even after 12+ yrs with this disease, I still had only 3 small lesions in my brain, and two BIG, BAD ones in my spine.

People can have spinal lesions, even lots of them, and not experience a whole lot of problem from them. I know someone who's had spinal lesions for 35+ years, and she swears that spinal lesions do not cause pain. :eek: Obviously hers have never been inflammed to any large degree . . . but that is just her experience. :cool:

My very first clear-cut experience with MS occurred in my spine, and I was initially paralyzed from it. At the time they called it "Transverse Myelitis", and I was advised that only TIME would tell whether it was idiopathic, as a result of MS or Devics, or ... That I healed very well, and went on my way with no BIG/new problems for another 12 yrs, I was actually given a "clean bill of health".

I did have symptoms throughout 12 yrs, but obviously no major inflammation. Had that first attack caused considerable permanent damage, and had the symptoms from that permanent damage escalated (as it often does with spinal damage, even without inflammation), then chances are that I'd have been labeled PPMS (few lesions, progressive disease process, etc.).

In retrospect though, I was actually probably Benign MS over that 12 yrs, eventually leading to RRMS in 2003. At one point, in 2005, they were going to recategorize me as SPMS because I was continuously accumulating disability (but still relapsing, which those with SPMS often do for a few years anyway), UNTIL I went on LDN. That helped stabilize me, and in fact reduced my EDSS by one point. :)

After dx, some people are quickly categorized as SPMS. That may be because the MS didn't cause considerable difficulty over the years, but in retrospect, they did have "relapses" (when undx).

Old autopsy studies show that 8% - 10% of the general population have MS lesions upon death. I doubt it is that we are just the "whimps" who can't handle the disease like those who never know they have it . . . :cool: It really depends on where it attacks us, how mean the MonSter is, and whether it continues to get progressively worse over our lifetime (for whatever reasons :rolleyes:).

Cherie

yeppers, I call that the 'Real Estate MS Motto'

Location, location, location.

:winky:

Here is some crazy food for thought as well then speaking of the spinal damage.

The lesions on my spine, which have been there the longest, are the ones healing first and fastest.

Not that I am complaining but that makes no sense to me any more than the classifications of MS.

Chris I am so glad you are finding evidence of healing. This has been a great thread, full of wonderful discussion and resources. I am so happy that you joined this group and add to our knowledge. Your experience is invaluable to us.

I tried one DMD and did not do well. Like others, I am sitting on the sidelines and evaluating all the treatments that are offered, because I just don't want to feel that sick again. That is why I am interested in the program at JH and listening to what is being discussed.

I hope you continue to have evidence of healing.

Well it is nice to actually feel better. I danced with my wife at our wedding in 04 and she wheeled me into JH 4 years and one week later. I never remitted or got better regardless. I tried Avonex and Copaxone with LDN. I ate Swank and modified Swank. I tried it all. Then someone from the www.thisisms.com mentioned restarting my immune system with HiCy. I thought he was nuts and I waited a month. I should have been there a month sooner but I didn't believe it. He was right about it not being that bad.

I can't understand why someone who has cancer would do chemo but someone with MS wouldn't. By the end of this year judging at the rate I was declining in the last month before HiCy, I would have had a catheter and been confined to my bed before Christmas. All with "RRMS". ( A term I use loosely) If you die physically from cancer, or in a bed with a catheter and are an invalid at 33 what is the point? (which is worse than death to me) No folks MS is a cancer it just doesn't have the crazy tumors to look at. It has lesions and if you get the disease in the beginning with chemo, just like cancer, you can get better and get on with life. This is what the HiCy seems to show.

I have been doing all I can to try to get folk to realize that if you have a MRI with a white spot in it you should be calling them. It is the only thing covered by insurance right now that is promising to stop it for sure and to also regain some lost mobility. I'm sick of RRMS, SPMS, or PPMS. It is plain 'ol MS and it sucks and it needs to stop regardless. PPMS is one that deserves special attention but remember that PPMS starts out in some people as RRMS. (Leading to faster aggressive treatment theories to slow the disease progression))

If I had a cold and my doctor cured me of my cold and said go tell everyone and tell them to come talk to me and I will cure them of their colds too...what would you do? I just got that for MS from the #1 hospital in America. They told me to tell everyone.

The wildest thing I can't figure out is I spent an entire day at the National MS Convention here in Denver at the end of May. 50% of the neuro's didn't believe it but were happy none the less. 50% wanted to know more and got all the info they could get from me. Both groups were excited even if they thought I was full of it. Then 50% of the MS'ers were so happy they took all the info. The other 50% was very angry with me..

I thought it was weird how the medical community who sees the clinical data believe me, but the folks with MS who see my MRI's getting better get straight up angry with me for telling others I am getting better.

I was warned by the docs it would happen but I didn't believe them!

I should mention to all of you folks I do own stock in ABPI and Opexa. I could care less if you folks purchase it because it will do just fine anyhow. I have 100 shares of each so do the math...I am not rich. I am a Christian who believes getting better and not helping others too is morally wrong.

Chris

I hear you loud and clear!

One thing you said that caught my attention was the stock issue. When I testified in front of the FDA to bring back Tysbari, the one question that the press and even my fellow people with MS all asked me first was if I owned any stock in Biogen or Elan! As if that would make a difference in my testimony! I sold my stock in Elan.

One medical journal even described me as a stockholder testifying and not a person with MS! I was furious. I called them and requested they change it...which they did.

And I don't own any Opexa stock.

There will always be a portion of the medical community who will be skeptical no matter the subject. It's just the way it is. Don't take it personal. You can't.

You have to do what you have to do for your own reasons. Period.

See the funny thing is I owned my stock in ABPI before the Sinaze crash they had. I bought at 3.28. Trust me I don't brag this treatment up for the stock reasons lol. I'll show the sad portfolio I have lol.

I won't sell my stock anyhow I don't care who asked me. I know what Biogen goes for, I used their product and I know where that got me. (Zilch) If Biogen is 40 dollars a share what is something that works going to go for?

I am a firm believer this is going to treat 79 other auto immune diseases as well. It works on MG, SAA, MS, and some others I can't spell.

No, like I said, I hope people just get better from MS. My stock will rectify itself as will other folks portfolio's. I got enough issue's in my own portfolio to give any advice on other's lol.

Chris, a couple of questions. I'm not trying to give you a hard time, I'm genuinely interested because I'd jump at Revimmune if the docs would okay it.

What led your final neurologist to classify you as RRMS if you never experienced any relapses or remissions? Did your MRIs show that you had enhancing lesions, which would indicate active inflammation? What condition were you in before you underwent the Revimmune treatment?

If you had four years of constant progression, with no relapses or remissions, then I don't know how any doctor could call you RRMS. Also, you mentioned that PPMS can start out as RRMS in some patients. This is incorrect. If a patient with RRMS transitions to progressive disease, then they are SPMS. PPMS patients never goes through any periods of relapses and remissions...

Thanks for all the info you're providing here...

Ok see this is where the clouds come in. I hear what you are saying and wow what semantics. I got sooooooo confused too. lol

The first neuro said I could have PPMS because of the Spinal lesions. The second thought PPMS because I just kept getting worse. Dr. Bowling was the one who said because I was now showing lesions in my brain that were enhancing or not enhancing...aka relapsing and remitting I was clinically RRMS. I personally always thought I had to be at least SPMS but he said no. It's why I went with him. He was less gloomy.

I hear your definitions my friend...they are just as confusing as the one I got if you ask me?!? Mine probably make you ask the same questions I did as well! lol I am still like...huh? To me PPMS is no inflammation, black holes, and brain and spinal atrophy. If it's not that bad yet you got a chance.

When I went into JH I was in horrid shape. The video on www.chrishadms.com of the clonus and how bad my walking and balance was would show you it all. I could walk only 25 feet at a time and a cane didn't help much. I was taking 80mg of Baclofen a day and the next step was a pump. I have a pic of me with Dr. Brodsky on the site and it was the only time in 8 hours of being at the hospital that day I stood up. I couldn't pee well at all. I had no appetite. I kid you not. I would have been bed bound with a catheter. Moving was just getting to hard.

Ask away folks...please, please, please, ask away! It makes me feel like I deserved to get a chance to get better and I am not wasting this second chance!

Chris, I don't doubt that you are feeling much better and/or that this treatment is doing something for the disease process for you. However, you seem to have some misunderstandings about both the disease process and how well HiCy will likely work for people, and I think this is over-shadowing your messages.

As far as the disease process . . .

Although there are “trends” with each category (as we know them RRMS, SPMS, PRMS, PPMS), there are no “absolutes”. The defining factor is whether a person "relapses and remits", and then what happens in between if they do/don’t. Maybe these visuals and brief explanations will help you to understand the categories:

RRMS:

http://i12.photobucket.com/albums/a2...ss_44/rrms.gif

"This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous."

SPMS:

http://i12.photobucket.com/albums/a2...ss_44/spms.gif

"After a number of years many people who have had relapsing/remitting MS will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery."

PPMS:

http://i12.photobucket.com/albums/a2...ss_44/ppms.gif

"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..."

PRMS:

http://i12.photobucket.com/albums/a2...ss_44/prms.gif

"This form of MS follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.

http://www.mult-sclerosis.org/whatisms.html

As Mark explained (and the above information indicates), RRMS does NOT advance to PPMS. PPMS and PRMS are two categories that a person STARTS out in, just like they might start out as RRMS (and eventually advance to SPMS).

Having PPMS or PRMS does NOT mean a person can not have enhancing lesions apparent on a MRI. People with these two categories CAN have enhancing lesions, they just don’t normally have as many.

“An early MR observation about PPMS was that in addition to having a low rate of new lesion formation, the frequency of lesion enhancement following administration of gadolinium (Gd)-diethylenetriamine pentaacetic acid (DTPA) (Gd-DTPA) was less than that of other subtypes (10).”

http://www.mult-sclerosis.org/news/J...ingInPPMS.html

To be continued . . .

Cherie