This Is MS Multiple Sclerosis Knowledge & Support Community

Guest, west coast where? check this out
http://www.ms-mri.com/collaborators.php

I have already asked Dr.Haake he replied back to me on Sunday I am pretty sure it was a generated email and he had the same web - sight you gave me and I went to my family dr and the first thing she said to me when she walked in was did I want a trip to Italy I laughed said no but would she be willing to send me to a radiologist ( I had to go in cuz I am sick with some kind of throat thingy ) and explained to her what I needed to have done and then I could take it to Dr.Haake and he would read it she said no try to get into a " study " and call my neurologist...I called there and she said no and this is a theory of 1 man so I am at a lost with both of these dr's and really do I want them to " take " care of me when all I have asked was make sure our T's and I's are dotted and crossed and if there is a chance do the test nothing else..just the test...they won't so gonna look into going state side to have the tests done...and then Dr.Haake will read them for me...

hi all..sorry no caps as i type with 1 hand...i'm in bc canada ...i want to help get this tx moving here too! they don't want a cure..ms- big business...how can i help

shell, maybe you can get a referral to a diff neuro, or somebody more... vascular??? i have been talking with my doc, bit by bit, and we are trying to figure out who (besides Haacke) might be receptive at mac. i have a feeling my own neuro might have a no response too, but that remains to be seen. given the media release yesterday by MSSC, there may be a few studies cropping up over the next year that you could try to get into. i have never tried to keep track of new studies recruiting, but there are a lot of ppl on here who could point you in the right direction for that, i'm sure!

Hi Katie45

I’m from Vancouver area in BC as well. Yesterday I made an appointment with my family doc for this coming Thursday. Ironically just last week my rheumatologist suggested to see an MS specialist at UBC. I’m sooo dumping my current one. I’m already scheduled for another MRI in January. (waiting since June ). I’ll keep you posted.

I wouldn’t mind to get in touch with you.

Susan – you go girl! We can’t afford to sit and wait. Not this time

Going state side is a no-no as it is going to cost about 80 grand for the test just a wee bit out of my ball park figure lol...The MS Society in canada have put an issue out last night they are going to start testing and to go to St.Joe's Hospital in Hamilton if any one would like the info I will be more then glad to add you to my facebook as I have links there and all the other " fun " stuff...as for looking for a new neuro no I don't see her again until I need another prescription and that isn't until the fall I just seen her last month so I have plenty of time to get this rolling...hopefully with me bugging I can get this test done....hopeing....

Well it was a little encouraging to hear in the news today that the MS Society decided it will support funding for this new treatment. However I am told it takes 9 months to a year before funding even gets approved then they claim it will take extensive research and trial studies before any treatment is considered.

But where does this leave all of us who live and battle with this disease every day. I feel like a ticking time bomb until something becomes available!

There must be other ways of getting something done sooner - possibly through the Vascular Medical people. Maybe start writing or emailing all the Vascular departments, universities departments &vascular organizations about this discovery to see if there are any vascular doctors out there other than your neurologists & MS clinics and see if they can do any evaluating for MS patients.
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Here's the response I received today from my doctor at the MS Clinic:

Hi Susan,

I can understand all the excitement following the W5 report.

However the clinic will not be referring patients to get any testing done at this time. The MS Society is looking for a research grant to be distributed in the near future in order to get the proper testing facility in place throughout Canada.

We feel that a lot more testing needs to be done before implementing a more permanent treatment plan.

We suggest that you stay tuned to the MS Society website as they will have the latest information about it.

Hope this helps,
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Anyway if anyone has any other ideas let me know - I am all for getting something going somewhere - somehow!

Cheers
Susan

Hi Everyone,

Has anyone tried to get on the ms-mri.com website lately? I have tried from a few different computers and it comes up as page not found. I know it was there a few days ago but I can't find it anymore.

i could be wrong, but i interpret this as a reaction to the onslaught.

FYI
http://www.thisisms.com/ftopicp-77145.html#77145

Hi Jimmylegs...

I have been trying to access the site you have listed ms-mri.com and keep getting the message that the site is unavailable. Has it been blocked? We are trying to access a scan for our daughter, as I mentioned in a previous post. She is 16, newly diagnosed with MS and about to decide which drug regimin to begin. We live in Halifax NS and have been given the same advice as many others by our Neuro...start the drugs and wait to see what happens with Zamboni's findings. Well, sorry... but we are much too proactive for that! Thanks for any info you have.

hi there amc, the site appears to be off line at the moment. it was getting hammered pretty hard. see the FYI link above, there may be an avenue to pursue there...

or, for the patient patient ;)
http://www.thespec.com/News/BreakingNews/article/681126
(thx cah)

Thanks for that. It is undoubtedly going to be very frustrating and very difficult to get timely access to this potentially 'life-saving' scan and related treatment. Considering the $$$$$ to be lost by drug companies, should there be any validity to Zamboni's findings, even the most well intended researchers, hospitals and clinicians will be stuck between an rock and a hard place. So, at least for the short term, those of us directly impacted by this disease, need to be our own best advocates and support. I am glad to have stumbled onto this blog, and hope that everyone will continue to share so that we can connect more of the dots and get access asap.