OK that is my point. Half the docs say the chart means nothing. Half the docs say the EDSS scale is worthless too.

I was PPMS according to the chart. That is the point of the disease according to 2 neuro's I have spoken with that shows no activity and steady decline. I had nothing but Spinal Lesions for the first three years of my diag. So I had Spinal lesions...aka, PPMS, no brain lesions and constant worsening of symptoms from onset also a sign of PPMS. I would have killed for one those little physical plateaus in those cute little charts. I didn't even get a squiggly line.

As a neuro explained to me the charts are great but what he needs to see is this: Do you have lesions that enhance and then at times do not? This means your MS is Relapsing when they enhance and it's Remitting when they stop. Relapsing Remitting is a clinical term used for the MRI but can be exchanged with physical symptom recovery as well. It's why the chart is developed to establish some kind of relationship between the two. Even though we know MRI does not correlate with disability.

The one neuro I met from BC at the end of May at the convention also referred to MS as "Showing MS" or "Not Showing MS" instead of RRMS or PPMS. He said SPMS was just bad RRMS that had moved past inflammation and was leaning towards PPMS or "Not Showing"

No, the chart has been there since the first week of my diag and the only one who made any sense of it to me was the nuero in May who told me that chart made no sense.

Please review the following:

NOTE: “Gadolinium is not necessary when only the spinal cord is examined. Contrary to the brain there will only rarely be enhancement in the cord.”

http://www.radiologyassistant.nl/en/4556dea65db62

The Gad-enhancing lesions will appear as “bright” white spots . . . but this does NOT necessarily mean someone is not PPMS or PRMS. Those two categories can have enhancing lesions too.

Hence, it may be that you are PPMS even if you had a few enhancing lesions. The primary consideration is whether there was "a gradual progression of the disease from its onset with no remissions at all”. This defines PPMS, whereas RRMS 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.”

To be continued . . .

Cherie

Either you misunderstood him, or he doesn't know what he's talking about.

It does NOT mean you are relapsing when you have enhancing lesions. It means there is an inflammatory process going on with the disease (which can happen with any category) . . .

If they took a MRI of our brain every other week, they would see those Gad-enhancing lesions blinking like a Xmas tree (moreso with RRMS). Whether they cause us any problems, ie. a relapse, is another story. Sometimes they do, and sometimes they don't. When they do, they may choose to try to reduce the inflammation by treating us with steroids. When they don't cause us problems, we don't even usually know one way or another, because we don't go into the doc complaining.

Gad enhancing lesions does NOT equal Relapsing Remitting.

Cherie

The GREAT news about all of this is that even if you do have PPMS, which seems to be the case, this treatment is working for you, at least for the time being. It must be stopping whatever inflammation you have going on . . . chances are what’s causing you the most problem is spinal inflammation. Mine “flare” regularly too. :(

As per my prior posting:

There are no treatments out there yet that are “promising to stop it for sure”. If what they’ve found is that it doesn’t work for 2 out of 9 patients (23%), AND then 50% experienced a reactivation within two years . . . it is a long way from a cure.

However, for those who have run out of options, I personally think it might be worth a try. What are the major side-effects and risks (based on this very small patient study to date)?

Cherie

Ok, I'm done ;-)

lADY eXPRESS 44,
yOUR LINE CHARTS TO ME ARE GREAT BECAUSE THAT'S HOW i UNDERSTAND IT. cHRIS DOES CONFUSE ME, i WAS UNDER THE IMPRESSIOM cHRIS HAS HAD ppms DIAGNOSIS, BUT CLINICALLY (THRU mriS) LESIONS CAN BE SEEN ENHANCING AND (sorry attack of the caps) not enhancing making him clinically rrms. This is totally new to me. Chris, how often were you having MRIs? I am inspired enough to contact JH, it's very close. I think my age and degree of disability will eliminate me from program, but worth a try.

See that is my point about the different types of MS. I still feel it would be better to just refer to it as showing and not showing...referring to the MRI. You can always throw a "slightly" showing or a "severely showing" to a Not showing with atrophy. It seems more precise to me. At first I would have been something like "mildly" showing with progressing disability. Before JH I would have been "severely showing" with rapidly progressing disability. You can always throw the word active in there somewhere to describe enhancement as well.

Oh but there are so many holes in that as well as the current way. I say we call it MS!!

I received MRI's every year. I had one before I was diag'd and they missed it! 2 in the last year before HiCy, and 3 since HiCy.

I know the oldest person so far is close to 50. I also know I was a 6.0 because I was still walking but within a month I would have been closer to a 7.0.

Duration or disability does not matter. White spots do. Does your MRI have white spots? If it does call them.

Back to what Kerr said about the reactivation....

It is why I and Keri are on Copaxone for the next year. I am willing to bet with the use of this for the next year we don't reactivate. If we do it will be many, many years down the road.

I'm glad you are inspired, and I would agree with Chris that it is worth a try. One of the points that seems important to me, no matter what the category, is the following:

It seems to me that Chris most likely has inflammed spinal lesions even if those spinal lesions don't show as "enhanced" on a MRI. And he probably doesn't have many enhancing brain lesions. If so, the only differences between his category and mine are that I have continued to have attacks and remissions, and very fortunately, the spinal lesions didn't leave me with as much permanent damage as they could have (at any time along the way).

If this treatment is working for him, it may work for others with PP or PR MS. :)

Cherie

I hope that you are just one of the ones that does not reactivate, for whatever reason, and that you are not having to rely on Copaxone to influence the equation.

Even though I am RRMS, as I've mentioned previously, I have very few, small brain lesions. My lesions are BIG & BAD in the spine though.

I was never offered the CRABs, and when I asked about them, was told they would not help my "type of MS". This is true of steroids as well; there are no trials that have ever proven steroids helpful for spinal lesions specifically.

Whatever this HiCy is doing in your spine (and/or brain), is all good. Whether it is influencing the inflammation in a different way then the CRABs do, or whether it is attacking a different part of the disease process all together, it's working for you. Personally I do not think Copaxone will help things in any way though, just as it not known to for PwPPMS at the moment.

Cherie

See I think it will work for this reason alone:

Mice and Human DNA is SOOOOOOO close. Very different but soooooooo close.

In those mice they give the Copaxone to they can't give them MS. As well as in Humans, if they are given Copaxone very very early on in this disease a good deal of these people never go past the one flair up they have. In some of the studies with Copaxone they have actually seen Myelin repair in Mice, and people if it is early on in the disease process.

So with that said now that our immune systems have been set right and it's like it was before we all activated. The hope is all the clinical trials of early Copaxone use and how good they went, along with the success of Copaxone in those mice, with healthy immune systems and the Copaxone as a training tool, we will not reactivate.

The folks who have stayed on Copaxone even after if they were treated were the ones who haven't reactivated yet. This compared with the animal data and existing Copaxone data made it perfect sense.

I met a woman who was the head nurse under the head of the CDC for the US government around 10 years ago. I forget her name and it was at a conference.

Anyhow

The head of the CDC- her boss- said to her and I quote, "The US government learned it's lesson from Polio and you will never see another disease cured again. You will only see them controlled. Polio cost billions in fees that could have been generated and now all the government will allow is controlled disease so the diseases can continue to make money."

Interesting theory, and maybe there is something to that.

We do know that animal studies with MS hardly ever pan out the same way in humans . . . how many times have I said I wish I was a mouse? ;). . . but maybe they will learn something more about the disease by trying.

The PreCISE trial, which measured the reduced for developing MS, with the early use of Copaxone for Clinically Isolated Syndrome (CIS), showed there was a reduction from 43% (on Placebo) to 25% (on Copaxone). In absolute numbers, that means a reduction of 18% of conversion to MS (with a 16% drop-out rate) . . . which really isn't all that great. However, perhaps combined with the HiCy, the odds will be better. :)

http://www.medicalnewstoday.com/articles/104462.php

Cherie

I saw that but as my docs also told me...If someone has CIS they already have shown signs of a whacked out immune system.

This is using Copaxone on a immune system that is brand new and not crazy (so they hope) just like it is in the mice.

My immune system is so new I need to have all my vaccinations again. We are hoping the Copaxone turns into just one of those.

Yeah, but if your immune system is no longer "whacked out", then Copaxone shouldn't even be necessary at all.

Based on his anology, maybe we should just put Copaxone in our water supply so that no one EVER gets MS. ;)

If the treatment didn't work for 23% of the people . . . we are now down to 7 that it did work (initially) for.

Then if this treatment, combined with using Copaxone after, worked for 50% of those people (3.5 ;)) over two years, we are talking about a very small number of people. I am assuming that at least some, if not most, are RRMS . . . so "remission" is the nature of the beast too (especially if the Copaxone is working for them), so it is IMPOSSIBLE to know if this treatment is "working" the way they hope it is.

The numbers are too small to draw conclusions . . . but that does not mean to say that it isn't potentially a good option.

There is no cure, YET, and nothing that can "promising to stop it for sure". I think you have to be very careful about suggesting otherwise.

BTW, you never answered about side-effects and risks . . .?

Cherie

:p I have OOMS

That's "On Occassion MS"

:D

Something caused the immune system to activate. It is just thought it will not reactivate with Copaxone there to help say, "No"! Some peoples immune systems have no reason to take Copaxone. It's healthy. The only way they would know if they person had MS would unfortunately was if they had issues. At least with this they believe if this is doe early enough they will have function restored and with the Copaxone it will become a PIA like light diabetes. Gotta watch it but thats it.

The folks who reactivated were retreated ad given Copaxone and they are farther than 2 years out now. If the original subjects can go 10 years (FDA cure criteria) without reactivating then this will be considered a viable "cure" option. We have about 5 years to wait for that. The only reason Dr. O'Donnel, Kerr, and Brodsky need to wait is for the FDA rules. They already know this cures SAA and MG and will say it very definitely as a "cure". You can ask them and they will all say they are pretty sure they have MS cured they just need to play the governments game now.

The side effect was I felt like I had drano and heroin put in me for 4 days. I was sick for 4 days. No fun at all. It was just like the flu. I woke up the day after I was released and the chemo was out of my system (4 days) and I was clear as a bell for the first time in my head in 20 years.

The biggest risk is a secondary infection during the 2 weeks after the chemo and waiting for the immune system numbers to come back. However the protocol doesn't allow you to put yourself at risk and you are on preventative Antibiotics, Antibacterials, and Anti-fungals for 2 weeks. I take a anti-bacterial till Sept then I am done with all meds but Copaxone.

I can't imagine how anyone could die from this unless they just ignored what the protocol says to do.

I found this and I would call it, a must read for anyone interested in the HiCy treatment.

Long, but so interesting......

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

Chris, it can not be a cure, at least not for all of us.

2 people it didn't work at all for.

50% (assuming of the 7) were reactivated within 2 yrs.

That means about 30% have had no advancement in 5 yrs. That's about the same odds as the CRABs ALONE, and those people are on Copaxone.

Cherie

See...your data is skewed because of the small study. It looks way worse.

You can call JH and they will confirm this:

All 9 of the patients stopped progressing over the 2 years even though some of them did need to be retreated. 7 of the 9 over the 2 years improved in all MS testings. The 2 that didn't improve, but got no worse, were late SPMS /PPMS. ( I hate those terms)

All 9 in that first trial stabilized, some after retreating. 7 of the 9 folks got better to some degree. Most were EDSS of 6 and after 2 years were close to a 3. They learned a valuable lesson about axonal death and neutrophils and the correlation with MS cells because of two of the folk who needed to be retreated in this trial.

Unless you two don't want to be confused with facts.....read the link, I posted..:D

If you will notice I already have that posted the article in with the post I put up of all the other links pertinent to the treatment.

I didn't put up all that stuff trying to up my hits on my website I just put it up there so rather than trying to find all the stuff you could go to 2 websites that is centralizing all the info.

www.chrishadms.com

www.gothicy.com

I will be in another article in Aug/Sept JH alumni magazine and we will be putting that article up as well.

Folks I am not doing this to look cool...I'm doing all this to make it easier on all of you!

It's not my data, it's their's . . . but I agree nine people is not enough to prove statistical significance. Twenty-one people were screened for that trial, but only 9 were accepted. Part of that protocol included that they had to be:

- Aggressive RRMS
- 2 or more gad-enhancing lesions
- 1 exacerbation in the preceeding 12 months
- no exacerbation in the last 3 months

*The median age at time of entry was 29 yrs old.*

Two of the people received either steroids or rituximab during the follow-up period, and the trial did not count exacerbations that did not SHOW active inflammation, by way of a MRI. I don't think this is an accurate assessment, since we already know that a HUGE % of lesions are not even visible on a MRI . . . but whatever. Either way, I think it would be fair to take those two out of the equation, since it was likely the other treatments they used helped to reduced their EDSS.

Of the 7 remaining, two saw no improvement in EDSS, but no advancement either. That is not necessarily uncommon for someone with early RRMS.

Some saw substantial improvement in EDSS, as much as 100% in one case. :)

Their gad-enhanced lesions seemed to stabilize quite a bit over this period, but this reduction did not seem to correlate with a reduction in EDSS, ie. even if they had/did not have Gad-enhancing lesions, their EDSS still fluctuated.

Sorry, I don't really have time right at the moment to analyze all the information in detail, but here it is:

http://archneur.ama-assn.org/cgi/rep...noc80042v1.pdf

Cherie

I did read it, but I didn't see anything on these stats . . . :confused: What did I miss, Sally?

Cherie

Thank you Sally.

Chris...it's great that you are so gung ho about this and you are doing well...but you have to understand that not every treatment works for everyone.

The number of people on this treatment is not enough to call this a cure. Even the scientists who are administering Reimmune who are "just playing by the government rules" as you call it, are not saying it is a cure for MS. (if they are, I've missed it. I believe they are calling it a potential cure.) It's a treatment in the trial stage.

This is sounding like the arguments that took place when Tysabri first hit the market, then was pulled, and came back on the market! It's a cure, it's the best treatment on the market, it's efficacy is better than all the other DMD's out there. Well, yes and no. It depends on who is taking it. It works for some but not for others.

Chris, you know that about Tovaxin. If you don't produce MRTCs, it won't work for you. You can't get the vaccine made. And not everyone with MS produces MRTCs. And even if they do, not everyone produces them in the quantity to make the vaccine. So they move on to something else.

The facts can speak for themselves about Revimmune...we don't have to debate the facts.

We can discuss the facts like rational adults. We all know from experience that what works for one person may or may not work for another.

We are all in this together. Let's work on it together. We don't have to agree, but let's not beat each other up about it. It's just not productive.

From "'Rebooting': A promise for Autoimmune Diseases" in Johns Hopkins' Health Insider on Wed., July 2, 2008.

Dr. Brodsky cautions that, before this can be called a cure, the patients must remain disease-free for ten or more years.

http://www.gothicy.com/content/view/27/34/

Chris, I don't think anyone is debating that!!!

Anyone in a clinical trial should be applauded! It's cutting edge technology!

Thank you!!! And thank you to Keri! And the rest of those who are trying this therapy. It gives hope to those of us who have failed, or have been failed by, the current treatments available.

We are all lab rats! ;)

There's an article about HiCy on the front page of the 6-24-08 edition of The Sun ( Baltimore ) newspaper. A neighbor of mine, who for some reason got this paper ( that's not our local paper. We're in SE,PA ), brought it over to me today just as I was reading this thread. The article features Richard Bauer , the same man in the article ( and pic) in the link Sally provided. Just an FYI, that's all.

I didn't mean stats, Cherie..:) Stats don't mean a lot to me....I'm a, proof is in the pudding, type of scientist..:D

Yes, Chris, Thanks very much, to You and Keri..:hug:

Well unfortunately this is not a drug for just MS. If you have an auto immune disease. This is not for any certain type of MS. It is for MS

Rob and Doug will both tell you this would probably work for any MS to stop it. However to get the results the FDA wants and ABPI wants (as it is with most MS therapies) they only want the folk with showing MS because they are the ones that will show the most improvement.

The simple fact is if you have MS and you have lesions ad disability this is the only thing out there on the market covered by insurance that promises to heal them and restore lost ability.

Why would you want to spend years suppressing your immune system with immune modifying therapies that are that hard on other body parts? This is a one time killing off of the immune system, then letting your own body fix the damage. This will also provide less issue's over time for those of you wondering about toxicity. HiCy doesn't hurt your bone marrow / stem cells.

This is the only therapy that allows your body to repair. I simply gave you all the info to make a decision. I personally could care less if you guys took advantage of this but in 2 years when your neuro asks why you didn't do it sooner if you knew about it and had the opportunity instead of waiting for 2 more years of disability, I pray your answers are as satisfying to you as the people who are getting better are to me.

I have a hard time with words like "promises, cures, restore" when speaking about MS.

At this time there is NO gaurantee Revimmune or any other drug will do any of those things. As it is we are 10 to 20 years from knowing if Revimmune does what some believe it can do.

I understand your enthusiasm and I hope your right but at this time I have a hard time getting excited.

I'm curious, Chris - how long have you been diagnosed?

I believe he's been diagnosed since mid 2004.

I'm sure I have had MS since I was 8 years old. I physically started and was dx'd in June of '04.

I know and it's OK. I just wish you would go here....

http://www.gothicy.com/component/opt...d,14/Itemid,7/

read the other blogs.

If Keri gives us permission to centralize her as well we will use her posts from her there too.

Please I do ask for you to show me anything else out there with these results? If there is why is no one talking about it?

Chris, this is a group of some very healthy, educated skeptics, who know to look behind the statistics. I helped a biology professor do a study on circadian rhythms with slugs back in the late 70s. Basically we took the data we collected and looked for the statistical model that made our numbers look the best for what we were trying to prove.

That said, of course we hope you and Kerri, as well as the others do as well as you possibly can do with the technology we have. You are on the cutting edge of a frontier drug protocol. Whatever happens, this was your best shot to try to stop your progression. I think we all understand that.

Again, I am learning so much from this thread, and again thank you for starting it.

See you are the first person who can truly appreciate why the RRMS folk are given priority...it helps the data to look better.

I mistyped before...I was dx's in 04 but I have had it since I was 8.

Yes, it does. I think other folks here get that too.

There is no perfection in how any of this is done.

However, we do need to move forward, despite the variety in MS progression.

I am grateful for the doctors who struggle to get new studies approved and grateful for people like you who will go for it, so ultimately we all benefit.

It is wonderful that you have this very gung ho attitude and you are fighting, to get as much of the former you, back as soon as you can. It is a battle worth fighting, especially at your age with your progression.

I can tell you are a fighter. It is why this thread is on page 8 already and you are still with us! :) Bravo!

Chris

Are you saying that we aren't believing you because we are not jumping on the bandwagon and doing this therapy??

Not everyone CAN do this. Your enthusiasm is to be applauded but hey you have to respect other's choices. This is brand new and not proven yet. Give it some time. :)

I am in the Tovaxin trial and I am watching what is happening on that front. Look how quiet it's been.

Chris, I have no more faith in Tovaxin (right now) than I do in Revimmune although I wish Av8rgirl and others in the trial all the best.

As I said before I am very skeptical :rolleyes:

I truly appreciate you, Av8rgiirl and others who are willing to try new treatments, to be lab rats ;)

Well I know of of two people who quit the Tovaxin trial to do this and they were getting the real thing. It was the reason why I was wondering if anyone with Tovaxin had seen lesion or black hole healing like they are with Revimmune.

I am not saying you need to hop on any band wagon folks. I just find it sooo fascinating how some say they want to get better but get rather mad when others actually do.

Kick back and wait. If your MS will let you -do it!

I wonder how many have been defined by MS and now that the definition is changing so are these people. A lady told me, "I've been doing stuff concerning MS for so long I can't imagine what I would do if MS was gone!"

Exactly!! No one likes change.

Chris, Just guessing, I certainly don't know. Has anyone ever suggested PR to you, you sound like a weird combination of both in a Chris-like manner. You just don't fit molds, you kinda lucky dog.