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.

I find many, many neuro's now say RRMS to all to give them an opportunity with ABCR drugs because of insurance companies. Not sure if I agree with 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.