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. Obviously hers have never been inflammed to any large degree . . . but that is just her experience.

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 . . . 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 ).

Cherie

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

Location, location, location.

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:



"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:



"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:



"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:



"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