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.