This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anyone been to NYU for screening? according to what I am seeing they have one of the most powerful machines, a 7 Tesla MRI, and Dr. Grossman at NYU is doing research. Here is what I found in an article:
Molecular Imaging
The ability to tune into these other signals is expanding the applications of MRI, and causing a lot of excitement in the field. The applications are part of the emerging field of "molecular imaging," and will enable researchers to distinguish minute amounts of metabolites in the brain, such as glutathione, taurine, and aspartate, as well as neurotransmitters used for neuronal communication, such as glutamate and gamma aminobutyric acid (GABA).

Researchers are interested in characterizing diseases as diverse as multiple sclerosis, epilepsy, depression, alcoholism, Alzheimer's, Parkinson's and schizophrenia by their biochemical brain signatures. These signatures could provide early clues to chemical changes in the brain that are occurring due to disease, and potentially offer new treatment options that could modify these alterations. For example, Dr. Grossman's laboratory has identified the signature of a chemical called N-acetyl aspartate in the brains of people with multiple sclerosis. Early studies suggest that patients with an imbalance in this chemical may benefit most from aggressive therapy.

In addition, the field of molecular imaging allows researchers to look at more of the fine details of the brain itself. In Dr. Helpern's laboratory, for example, high-field MR is being used to identify plaques in the brain that are one of the hallmarks of Alzheimer's disease. It is hoped that the ability to identify these plaques with a technique that is "noninvasive" will lead to earlier diagnosis of Alzheimer's than is now possible, and therefore to earlier and more effective treatments.

"There is so much more that we will be able to do with a 7-Tesla magnet," says Dr. Helpern. "We will be one of the few places in the world with this kind of capability."



Has anyone had any experience with them for screening or contacted them about the CCSVI protocol? I just called and sent them an email with Dr. Haacke's info and protocol.
Michele RN

Interesting!

I wonder what this therapy is that they allude to? -

"Dr. Grossman's laboratory has identified the signature of a chemical called N-acetyl aspartate in the brains of people with multiple sclerosis. Early studies suggest that patients with an imbalance in this chemical may benefit most from aggressive therapy. "

x

I just emailed Dr. Grossman at NYU to see what they are doing about screening for CCSVI as they have a tesla 7 machine and I found out while doing research on the NYU site that he collaborated with Dr. Haacke on his research so he should be very familiar with it. As soon as I hear back I will post. Trust me, if I don't get an email I will call, fax, or show up there personally! They have state of the art equipment and I want my family and friends tested! NOW!
Michele RN

Our outreach group emailed Dr. Grossman about CCSVI and Dr. Haacke in October with no reply. Hopefully he acted on it anyway.

Another person at NYU did respond and put us in touch with an IR at University of PA who knows Dr. Dake. He is was aware of CCSVI,but was not ready to do diagnostics or treat it.

bestadmom,

I admire your persistence. I really do.

ozarkcanoer

Thanks OC! I sell for a living so it's a job.

Good things are coming from our outreach. It's confidential right now, but the interest is there.

I just stumbled on this thread and wanted to report that I made an appointment for an MRV at NYU this morning. However, I have not consulted with any of the doctors there. I asked my Neuro to write the script, only because I thought it was a good place to start. I realize that this may be putting the cart before the horse, but I didn't know where else to start!!

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

Hi Jen,
I went on to the NYU site and discovered some interesting things. Dr. Grossman and Dr. Joseph Herbert worked with Dr. Haacke and the others on the CCSVI paper.
Well, at 3 am this morning steam was coming out of my ears when reading this as my friend has been a patient of Dr. Herbert for YEARS and Dr. Herbert never suggested screening! I am livid to say the least. I don't care if any neuro/MD doesn't thing that a person would be interested or benefit, it is their moral obligation to inform them that there are choices. Treatment is a patient's option, screening and information is a physician's responsibility.
I told my friend that he better call his doctor and get an Rx and an appointment immediately.
Explain why NYU which has the 7 Tesla MRI specifically to do research isn't publicizing their ability to do CCSVI screening and starting their own research?
We should be screaming and inundating them with calls.
FYI-they have still NOT responded to my email about the CCSVI screening.
That is RUDE.
I thought physicians were supposed to heal not be heels.
Yes, doctor bashing, I am a nurse with first hand experience and while there are wonderful ones out there they are kowtowing to BS and drug companies. And, yes let's not forget the "it's autoimmune" mindset.
Just as a side note: I was told at 17 I would never have children bc of some problems I had. I have 4 wonderful healthy sons. I don't listen to doctors especially these guys who are withholding information.
I don't know why everyone with MS and their families hasn't marched on NYU or the white house lawn about this.
I told my friend that if they don't get the CCSVI screening done at NYU immediately I am not talking to them until they do. I got the point across.
Maybe everyone should bombard them with phone calls and faxes. Tell 60 minutes about it??
Let's remember that a lot of their research is publicly funded with our tax $$$!!!
Michele RN

I don't believe that screening for CCSVI is necessarily dependent on a 7T MRI. Wasn't Dake using either a 1.5T or 3T to perform the MRVs?

The following is a much better argument for getting them involved...




NHE

I agree with your point, but the point I was trying to make (perhaps not clearly) was that NYU is a premier research facility with an interest in MS (if you go to Dr. Grossman's or Dr. Herbert's info page on the NYU website you will see a tremendous amount of research that they have done) and with phenomenal equipment that they touted would be used for research and would benefit patients and here they are doing nothing. If a 1.5 or 3 Tesla produced such a wealth of information can you imagine what a 7 Tesla could possibly provide?
Additionally they were able to see much more as was published in their papers. Here are just 2 examples from Dr. Herbert's bio:
(#5 on research page)Kirov, I I; Patil, V; Babb, J S; Rusinek, H; Herbert, J; Gonen, O. "MR spectroscopy indicates diffuse multiple sclerosis activity during remission". Journal of neurology neurosurgery & psychiatry. 2009; 80: 1330 (#J0181453)
(#6) Varga AW; Johnson G; Babb JS; Herbert J; Grossman RI; Inglese M. "White matter hemodynamic abnormalities precede sub-cortical gray matter changes in multiple sclerosis". Journal of the neurological sciences. 2009; 282: 28
Why have a 7 tesla and not use it? Why do research and not tell your own patients?
Sorry, but that just doesn't fly with me.
michele
nurse with a lot of friends with MS counting on me!

Hi Michelle,
That's unbelievable! And here's another irony of this, which I didn't even connect until I read your post; Dr Herbert was the 3rd Neuro I went to after my introduction to this wonderful disease this past spring. I used the word "was" because I went to him once for a consult, asked him about LDN, and he chuckled and advised me with that gentle "pat on the head" approach that LDN was just "internet stuff". Amazing how this "internet stuff" has almost completely eliminated all of my MS symptoms! But he was more than happy to set me up with Rebif, which I obviously had no interest in.

The fact that he's not only aware of CCSVI, but also worked on the paper, makes me livid as well! I understand why doctors wouldn't want to tell us about CCSVI to not get our hopes up, but if he has FIRST HAND KNOWLEDGE of this, why on earth wouldn't he mention it to his patients so they could chose if they wanted to be screened? Especially if they have one of the highest power MRI's out there? I understand medicine is a money business, but what happened the the "heal the patient' ethics? I have half a mind to schedule another appointment with him so HE can read my MRV!!!

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

ok Jen, now I am really pissed off!
Did you know he was (or is?) a paid consultant for Teva pharm? He put my friend on copaxone and hi doses of prednisone. I wanted to go with my friend to talk to him and my friend was afraid I would explode. Now I will. I am furious.
Yes, I not only think you should schedule an appt but tape record it! and then march yourself in to the hospital administrator's office and contact the media (isn't 60 minutes doing a piece?).
God made me a nurse for a reason-so I can help my friends and patients and filter thru this crap.
Where do they get the right to keep this from their patients?
Perhaps a "little" public protest with media coverage might help? After all NY a major location of medical institutions and "happenings" -I lived there for my entire life until I loved to Florida. When I had an issue adopting a handicapped child that was held in the foster care system for too long I picketed the foster care agency's office in midtown manhattan and got tons of media exposure-page 9 of a major newspaper (would have been front cover if not for an industrial fire in NJ).
The time has come! The waiting game is over.
Screening is a right, treatment is a choice. If we don't know we can't do anything.
michele

Michele,

Check your pm's.

Michelle

Michelle,
what is a "pm"
Michele

A private message.