RRMS - dx 06/09
LDN 4.5 mg - 06/08
- Family Member
- Posts: 63
- Joined: Mon Sep 07, 2009 2:00 pm
- Location: Cincinnati, OH
I have an appointment with my neurologist tomorrow to talk about my Buffalo images. He said in an email that the brain MRI was interesting in light of the CCSVI theory as that it suggests a high iron concentration where it would be expected. He had a neuroradiologist look at the MRVs and all I know was that there are abnormalities and he suggested coming in and talking about it. It should be interesting.
I just checked them out and I'm not sure why they are directing to the home page on You Tube. Here they are again: When I cut and paste them, they do work.
Now that I know there's more on the CD than just an MRI, I will make an appointment with my GP and a radiologist tomorrow. I've been trying to figure out where to go from here. I've traveled all over New York state, from Buffalo to Long Island, trying to get answers. I'll do anything within my power and means to get to the bottom of this "condition".
When I first approached my Neuro about CCSVI back in September, he told me there wasn't anything to the theory. I didn't stop there. I went to a doctor who attend the CCSVI conference in Bologna to get her input. After meeting with her, I found out about CTEVD study in Buffalo. I signed up for that and drove out to Buffalo. That was three weeks ago. After that, I made an appointment with a Vascular doc. When he advised me he couldn't help me, I decided to take a break in my quest. Now, after a few weeks, I'm ready to start the fight again.
I'm just not sure exactly what to do next. Because of the recent explosion in the news of CCSVI, I thought it was best to let things quiet down a bit before revving back up again. So, here I am, revved up and ready to go... and I'm open to suggestions!!
The problem with the links is due to the commas. Please see this post in the Forums FAQ.jenf wrote:I just checked them out and I'm not sure why they are directing to the home page on You Tube.
I hope that this helps.[color=blue]NHE[/color] wrote:Q: Why doesn't the URL I put into my message work?
bestadmom wrote:The mrv is on the mri disk from Buffalo.
The information that I read was that JNI was only performing MRVs on a limited number of participants in the study. I think that it was the first 250. They may have already completed these and may no longer be performing MRVs as part of the study.ozarkcanoer wrote:That's good to know, bestadmom !! It will probably be months before I go to Buffalo, even if I get chosen, which I may not be. But I was assured by Dr Haacke's nurse coordinator that I will be given a new date for Detroit.
The interesting thing is that BNAC called her this morning and asked her to come in on Saturday morning for an MRI. I find this very intriguing, because as far as I knew, the controls were not getting an MRI. Anyone know of any controls in this study who had an MRI?
Trial is underway. Results for first 500 will be ready in late January. I seem to be in the potential pool for the phase 2 trial.
No doppler or MRV results will be shared with patients or patients' doctors.
I'm very excited that this study is going on. If it proves a correlation between CCSVI and MS then we are all off and running.
If I'm not going to be able to view the results of my testing, and I don't think that this study will have a problem finding enough participants, I may pass. That's a long distance for me to travel, and I don't travel as well as I used to ( full-time wheelchair user). We will see.
I xxxx'd out any info that I thought they may not want the whole world to know about.
"Thank you for your continued interest in the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study. Chronic cerebrospinal venous insufficiency (CCSVI) is an ongoing problem when blood from the brain has difficulty flowing properly to the heart due to blockages or stenoses (narrowing of the veins). The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis (MS) when compared to healthy controls (HC) and controls with other neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical, magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.
I am aware that you have already been in contact with our team regarding the study. We would like to keep you at the front of our contact list and continue our screening procedures with your cooperation. We have received an enormous response to recent media reports about our study. Due to the number of applicants and limited funding we are providing you additional information on our study and requesting some details about you in order to assist us in evaluating your eligibility to participate. Currently, enrollment will be closed until late January 2010 in order to evaluate initial study results on first 500 enrolled subjects. If you would still like to be considered for this study or any future studies, please follow the instructions in this message.
1) Applications will be processed according to our study criteria and in the order they are received.
2) Please only use the xxx email address to communicate with our study. An automated voice messaging system (xxxxx) has been established to direct you. Voice messages are not being returned at this time.
3) If you decide to write to the email address above, you will receive a response with instructions to complete an online questionnaire.
4) Once the team evaluates the information you provide in the questionnaire, you will be contacted to inform you if you are eligible for further screening. This process can take at least 1-2 months.
Please note this is a research diagnostic study - there are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.
- Be an adult or child with confirmed MS
- Adult MS must be supported by fulfillment of the McDonald criteria
- Pediatric MS must be supported by fulfillment of Krupp and International criteria
- Have a disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting (RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported by the Lublin criteria
- Have normal kidney functioning as supported by lab work performed within 2 months of MRI testing (within 2 weeks if other criteria are met)
- Be able to communicate effectively
- Pass screening for MRI and contrast agent safety
- Be able to travel to Buffalo, NY to complete testing (we only have this site for testing)
You must not:
- Be in active relapse or have steroid treatment in 30 days prior to MRI
- Have any vascular or heart problems
- Have severe cognitive impairment/dysfunction
- Have a history of drug or alcohol abuse, cerebrovascular disease or cerebral vascular malformations, head injury or brain trauma
- Have any vascular malformations (Bechet Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep Vein Thrombosis within the past year, Chronic Venous Insufficiency of the lower limbs)
- Be pregnant or expect to be pregnant during participation
If you are writing on behalf of a relative or friend, please instruct him/her to contact us directly at this email address: xxxxxxxx
Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses.
No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available upon request.
If you think you are eligible to participate and are willing to travel to Buffalo, NY for testing, please take a moment to complete an online questionnaire which has been designed to assist our team in determining your eligibility as well as providing valuable clinical data for your research record. The questionnaire can be accessed by going to:
If you have already completed paperwork, thank you for doing so. I am still asking you to complete the online questionnaire so that we can gather additional information about you and so that your information is entered automatically into our database which will allow faster screening for the study.
Due to the overwhelming response, it will take some time to contact you for any next steps. But you can get the process started by completing the online questionnaire. Thank you in advance for your patience.
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I don't... these are several of the MR's, but none include scans similar to what I've seen online. I didn't think these would be sufficient. I do, however, have a prescription for an MRV from my Neurologist. I will call around today and find out where I can get one done. I'll also make sure to bring the CCSVI protocol with me when I finally get an appointment. Thank you for taking the time out to look at these and to post a response... I've been checking TIMS constantly hoping someone would see something in the scans that I couldn't! I'll keep the group updated in my progress.
There's no image in your post. I participated in the Buffalo study as well, and the CD they gave me only has my MRI's, with and without contrast. Do your images show your veins? Mine do not... if so, try posting them to You tube. That's how I was able to post mine. Unfortunately, it didn't help, because they were MRI's...
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