This Is MS Multiple Sclerosis Community: Knowledge & Support

**Posted:** Tue Nov 17, 2009 1:23 am

Thats so frustrating! Why is there no funding from the NIH or the health insurances (who would safe a lot of money if HDC gets approved)?

--Frank

Possible stop to Multiple Sclerosis could be just one trial away, however, pharmaceutical companies not interested

MS MRIA Utah woman is about to begin a medical journey that she hopes will save her life. Michelle Colledge has Multiple Sclerosis, a disease that causes paralysis, blindness, and sometimes ...

**Posted:** Mon Sep 28, 2009 6:42 pm

Hello forum! I see a lot of posts about the hicy dosage and I don't believe that what I'm doing is considered that.

I initially started almost 5 months ago with a regimen of cytoxan once a month for six months along with steroids that would get my WBC down to 2. At the three month point I would start taking Copaxone.

I have yet gotten my WBC count down to 2 and am up ...

**Posted:** Thu Sep 03, 2009 1:23 pm

My husband just got his first appointment scheduled at Johns Hopkins for December 09!!!
Wondering how long after his first appointment he will get the treatment...

thank you guys! I am sooo happy since his original appointment was for October 2010!!!

smiles, juliana

**Posted:** Fri Aug 28, 2009 1:07 pm

Hello everybody, my name is Juliana I am new to this board...

my husband has MS and we are trying to get him into JH for Revimmune treatment ASAP due to his conditions... I was given an appointment for October 2010 :(
I was wondering how long did it take for some of you to get in.
Also if they gave you a far away date at ...

**Posted:** Thu Aug 20, 2009 3:55 am

I just completed my first year of every three month appointments. Are we supposed to follow up every three months for the second year as well?

Thanks,
Steve

**Posted:** Tue Aug 04, 2009 12:16 am

Hi again everyone,

Well, it is with sadness that I report that things have been on a downslide for the last two weeks. My previous update, I was on top of the world and living without much limitations or restrictions. In the last week or so, I have become symptomatic to a somewhat severe degree.

Tomorrow I will go for my 3 month MRI follow-up and maybe we'll know more - maybe there will be ...

**Posted:** Tue Jul 21, 2009 9:28 pm

Hi everyone,

Sorry, I haven't been around lately... (and geez, I missed a lot - especially the CCSVI stuff....gonna head over to that board in a minute).

I came home from my second round on May 26th. The treatment went off without a hitch. Once again, I could swear that chemo wasn't in the IV, as I didn't get sick at all. The first night, after the treatment, I was almost nauseous - but not ...

**Posted:** Sun Jul 19, 2009 7:59 am

Hi,

Mel had hicy before having stents placed. I wonder if having stents placed and then trying to apply for hicy might not be allowed.

I wonder if Chris or Mel could have a quick word with Dr Kerr to find out if they would ever accept patients that have stents. (I wonder because of the risk of blood clotting whilst receiving revimmune)

If that is the case maybe I should consider Revimmune b4 CCSVI. ...

**Posted:** Mon Jul 13, 2009 9:15 am

What is the dosage given of the cyclophosphamide?
I found this article online and was wondering if the dosage is similar.

The objective of this case report is to document the possibility that immunoablative doses of cyclophosphamide may provide a long-term remission of multiple sclerosis (MS). We report the case of a 48-year-old woman with definite MS diagnosed in 1994 who has been in complete remission since a dose of 3800 mg of cyclophosphamide was ...

**Posted:** Mon Jul 06, 2009 9:57 am

At my appointment with Dr. Kerr last Sept he mentioned that he would be starting a trial of HiCy with a few PPMS patients and he said that he would have some preliminary results in about six months.

I emailed him in Feb to inquire about the status of the trial and he responded that it would be about another four months before he had any data.

I have tried to email him several times ...

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