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)