This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey-
to all "normals" in the Wayne State area, Dr. Haacke needs you:

http://www.mrc.wayne.edu/volunteer.htm

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Do you know if the study is blinded?

You volunteering?

My wife responded to an earlier posting on FB in regards to Dr. Haacke needing controls. My wife replied in September and heard nothing in return.

Is it for real this time?

I was hoping the study would be blinded so that he could identify those with MS and without which would go a long way in validating CCSVI actually exists.

Yes--this is for real. Click on the link for info. Participants will be compensated. It is not blinded. Dr. Haacke is trying to quantify what "normal" blood flow should look like, and he needs healthy normal controls. He tested himself first. If he finds CCSVI in normals, he will write about that. He is a scientist.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Ok. I just do not undertsand why these guys do not perform a blinded study where they identify people with MS and without MS based on "blood flow".

A blinded study I sure would. This one. Nope.

Let me see if I can explain this....this is not about efficacy of a drug or treatment, scorp. That is the realm of blinded trials with MRI. This is a test which has specific parameters. It is a diagnostic, not a trial.

Dr. Haacke has tested and has MRI/MRV info for about 500 pwMS/pwCCSVI. What he needs to see are normal brains. In MRI diagnostic studies, healthy controls are age and sex matched, but not blinded. Really....try to find a "blinded" MRI study with normals for diagnostics. They don't exist.

Dr. Haacke began this adventure back in Bologna '09 at the CCSVI conference. He was fascinated to see Dr. Zamboni's research as an explanation for the iron deposition in MS he had noted in SWI MRI (which he had invented.) It made sense to him, and he created:
http://www.ms-mri.com/

At that point, he was putting together an MRV protocol to help doctors see flow, iron deposition and reflux in CCSVI. Now he wants to have something to compare this to. He needs to run the entire Haacke protocol (SWI, flow, perfusion etc.) on normal people to have a baseline.

I would hope that healthy controls who live near Wayne State might volunteer. I don't think you'd qualify as a healthy normal anyway, scorp. I do, and may go in if Dr. Hubbard decides to do this in San Diego.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Sadly, my wife is only the 11th normal scanned so far.

Dr. Haacke needs funding....let's hope the NIH accepts his new request.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I think finding normal volunteers of the female persuasion is the bigger hurdle at this point. It would help with age age/gender matching, according to Y.

I would think with all the members and concerned folks here, we could do a lot better than 11.

I was scanned by the team last week and it was great to meet Y and Z. I still have a flow problem, which I was glad to hear (would like more improvements). My GP should get the full report soon.

It's a shame Dr. Haacke is having funding issues.

If I were nearby I would do it for free....anything to help pursue the search for an MS treatment, without the toxic side-effects.

My husband, a "normal", is being scanned next week in Hamilton, Canada - Haacke protocol. I believe that this testing will wrap up at the end of March.

http://ccsvism.xoom.it/ISNVD/Abstract-Haacke.pdf

Dr. Haacke has data on at least 1000 MS patients! Amazing. If he is still looking for normal volunteers, perhaps we need someone who lives in that area who could raise local awareness to get him some volunteers?