This Is MS Multiple Sclerosis Knowledge & Support Community

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Thanks for the update, Phil. All the best in an expanded recovery!

Brainteaser wrote:UPDATE

This will need to be over a number of months, plus a healthy diet and supplements.

Phil

Funny, I am doing exactly the same thing. Starting with a doctor for PT next week. I walk more and faster. I do not notice improvements everyday but I always have to compare it with a month ago.
I still have many other problems but many problems are gone or are better.
Have fun and good luck!
Erika

...until you even forgot you had MS!

Wonderful Erika; keep going

Pleased to see the update Phil - thank you. I will be hoping for everthing for you as I wish to follow your success.
Likewise Erika I hope all progresses rapidlyfor you.

Peter

Thanks for updating us Phil as you know we are very anxious and check this site for new info daily. Hope you see more improvemetns Phil. Looking forward to reading about them soon . Just hang in there !

To MS Australia:

From: hwebb
Sent: Friday, 27 November 2009 8:01 AM
To: MSConnect
Subject: CCSVI in the news

Hi there,

I'm disappointed to see that there's no information on the latest CCSVI research in the "latest news" section of your website. I've resorted to monitoring foreign MS society websites to keep abreast of the latest research:

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944

best regards, hwebb.

--------------------------
Hi hwebb,


I am not sure if anyone has responded to your email yet but I thought I would let you know that we have a report on the research by Dr Zamboni on the MS Research Australia website (http://www.msra.org.au/news-media/news.php) . I am finding out if we can place a link on the state and national sites for MS Australia.

Regards,

Cathy Milne

MS Connect Information Officer


MS Australia – ACT/NSW/VIC

T 02 9646 0721• T 1800 042 138• F 02 9649 0672

Studdy MS Centre, 80 Betty Cuthbert Dr Lidcombe NSW 2141

email: cathy.milne@msaustralia.org.au• www.msaustralia.org.au

--------------------------------------------------------------------------------

ACE wrote:.....I have been working along side a radiologist in Sydney and he now knows the exact protocol to perform MRV imaging on anyone that requires it.... ...It’s at Castlereagh Imaging in Edgecliff, just get your Dr or neuro to refer you for an MRV when there request the same protocol that Dr Alexander Sima had, the head radiologist there knows everything to do his name is Dr Houang ....

I had my GP fax over a referral for an "MRV to diagnose CCSVI (Attn Dr Houang)" this morning. Rang them up after it to make an appointment. The receptionist took my number and called back an hour or two later. I have an appointment at the end of this month (ie end January).

As I had a referral from a GP and not a specialist, there is no Medicare rebate (which I knew would happen, but would be a lot faster to initiate). The scans will cost just under $500.00 I will also be requesting to get a CD made of the scans (usually around another $60 for an MRI), and also try to post some of the outcomes.

Has anyone else scheduled an appointment at this centre?

HI MEMBERS My nero was contacted the CASTELREGH IMAGING CENTER
EDGECLIFF and talk to DR.HUOANG. HE WAS TOLD TO MY NERO that the first
MAV he has done for DR.ALEXANDER SIMA and he has found that IN DR.ALEX'S NECK RIGHT JUGULAR vein apperently of a blood flow problem.
But he has not 100%certine the DR.ALEXANDER has venous stenosies . So DR. HUOANG want a second opinion from his friend radiolist who is living in USA. By end of next week he will get the second opinion. so DR. HUOANG GAVE AN APPOINMENT FOR MY MRV SCAN ON 5th of FEB.
Another place in SYDNEY say they can also do this kind of MRV.
CONTACT NORWEST MEDICAL IMAGING, BELLAVISTA
TEL.NO.1300 330729
Also WEST MEAD PUBLIC HOSPITAL can do the Ultersounds DOPPLER/MRV
withyour neurologist's referral TEL.NO.98456533I do not know what kind of
protocole the HOSPITAL is using. Any neuro can findout the details. I am going to see my neruo. on27th of JAN. So at the time my neru will find out the details for me because my neruo. used to work in the hospital.Same day he will tell me the best vascular surgeon where i can go for the L.procedure in SYDNEY
THANKS

regardsl.
SEEVA :: :oops:

Hi Phil,
I understand that your LIJV was stented but what about your blocked vertebral vein issue where Prof.Z thought "selective catheterization of the AZY because a membrane of the outlet into the SVC is highly probable".
...did the folks in Poland address this?

OK, Melbournians,

We need to drive this train forward.

I am contacting possible leads for CCSVI treatment, but don't want to contact people who have given you a definate 'No'.

Please can you send me private messages as to what you have done so far to find diagnostics and treatments. Any names you give me will be treated with utmost confidentuality and will only be released with the doctor's permission.

I can not wait for trials. I need this now.

Thanks
DU aka Jennifer

I'm repeating this on "Melbourne Doppler" thread in case not everyone reads both threads.

MS society in the USA is handing out ccsvi grant money to INTERNATIONAL researchers !!! That includes Auusies

"UPDATE: Next Steps In Pursuing CCSVI (Venous Insufficiency) Research in MS – Letters of Intent Received from International Request for Research Applications -- Full Grant Applications Will Be Submitted by February 9"

Further details:
http://www.nationalmssociety.org/news/n ... x?nid=2206

Let your neurologists, radiologists, vascular surgeons...and other interested scientists know!

hwebb

Herald Sun has an article on MS and marijuana today (front page news). I'm not interested in this area..but the article does have a link where you can post a reader comment. I submitted a comment on ccsvi (she is marijuana useage as a treatment for ms front page news...and ccsvi not?)...so it'll be interesting to see if it get's through the editor and is published.

I would encourage other MS'ers to submit comments too.


http://www.heraldsun.com.au/news/doctor ... 5819469593

Just posted a reply. I note no CCSVI reply has been posted as yet...

yes - looks like my comment was censored out of the HeraldSun. Darn. Someone added a good comment about how they should sponsor studies regarding diet and MS rather than promoting pharmaceuticals for MS.