Canadians (and others) Lets push our medical system!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Canadians (and others) Lets push our medical system!!!

Post by Brightspot » Sun Jun 06, 2010 9:59 pm

Let's start documenting our attempts to get appropriate vascular screening and vascular medical attention.

I beleive we need to start putting our concerns in writing to our family doctors and neurologists. This way, when they attempt to brush off your concerns at your next appointment you will have a record of the evernt.

The idea is to bring a letter when you go to your doctor or neurologist with a reqest for testing or treatment.

Give the doctor some scientific papers which connect MS and vascular problems. (the Zamboni research, the Simka research, the study out of Jordan, some of the older studies which connect MS with vascular issues).

Include the paper by the International Uni0n of Phlebology and point out that it is a document which was signed by vascular specialists from more than 40 countries including Canada and the United States. Show them the part where it recognizes CCSVI as a congenital malformation of veins, and the protocol for safe well established diagnostic and treatment procedures.

Go to the website of your provincial medical services plan and print off the billing information for ultrasound, MRV and balloon treatment of veins. (You will find the technical term for balloon treatment of veins in the testimony from the parliamentary sub committee on neurological heath given by Dr. Sandy McDonald ) Let them know that in Canada all persons have the right to necessary medical attention according to the Canada Health Act, (even if they have MS).

Give your doctor or neurologist a copy of Dr. McDonald's testimony..both days. I beleive he reccommends testing of all persons with MS for CCSVI.

Give the doctor some papers indicating that the symptoms you are experiencing are symptoms of vascular insufficiency (headaches, dizziness, fatigue, balance problems, cognitive problems..etc..etc...etc)

Describe your symptoms to your doctor.

If you have had private medical teating which indicates vascular problems or the possibiltiy of vascular problems make sure you give them a copy of all of the reports. Write the words "HAND DELIVERED TO DR.___ ON____(place date of appointment here)" across the top of the pages of the reports. and if the doctor refuses to accept them do as one person did and ask the receptionis to place them into your file. )

Tell your doctor that the consequencs of untreated vascular insuficiency of the brain include irreversible brain damage and deteriorating function and quality of life. This is why the matter is urgent.

Now tell your doctor that on the basis of all of the above information you are asking for an immediate referral for ultrasound and / or MRV screening for CCSVI or a referral to a vascular specialist for assessment of your symptoms and the condition of your veins.

Reinforce the fact that the matter is urgent as you wish to avoid irreversible brain damage and loss of function. You may suggest that a couple of weeks would seem an appropriate amount of time to wait for confirmation of a referral having been sent. Ask to receive a copy of the referral.

If your doctor tells you that no one will accept a referral, let them know that it is their job to refer you, and that if someone recieves an appropriate medical referral and refuses to accept it, that you will deal with the matter accordingly.

At the end of the appointment hand them the letter. Make sure the letter is signed and dated, and keep a copy of it. After the appointment, sit in the waiting room and make some notes about the doctor's responces to your concerns.

If your doctor does not have time to talk to you about CCSVI or to review the information you provide, tell them you will leave it all with them, and that you would like a copy of your letter to be placed on your file, and that you will make another appointment for two weeks from today.

The letter may be something like this:

Dear Dr._______

At my appointment today I provided you with the following documents: (list them here) which describe the vascular conditon of CCSVI, and the evidence that that persons with MS are at risk for CCSVI.

I also provided you with some documents describing symptoms of venous insufficiency of the brain.

I described to you the following symptoms which I have been experiencing, and which I beleive are symptoms of compromised venous circulation : (list them here).

If you have provided your doctor with test results from ultrasound and / or MRV list them hear and state what pathologhy or vein abnormality is mentioned in them.

On the basis of the above information I am requesting that you immediately refer me for ultrasound and /or MRV screening for CCSVI, or refer me to a vascular specialist to assess the medical health of my veins and the symptoms I have described to you.

As I may be sustaining increasing and irreversible brain damage as the result of an untreated vascular condition, I am asking that you do not delay taking action to have my vascular health assessed.

I will request a follow up appointment for approximately two weeks from now to update you on my symptoms. At that time I will be requesting a copy of any referrals which you have made for me.

Sign the letter.

(you will want to correct the spelling if you decide to cut and paste any part of this letter).

I do not have any medical or legal training. These are just my thoughts.

I beleive that if doctors and neurologists across the country begin to receive letters documenting the specific concerns and requests of pateints, we may see some change in the way we are treated. Or at least we will have the documentation to address the matter in the courts.


Please feel free to cut and paste, and post this information or any part of it anywhere you think people may find it useful.

Modify it... edit it...use it it.. share it.

Someone said it should have been called "How to creat a Paper Trail" someone else suggested ti be called Document your doctor's decision then take further action....
Last edited by Brightspot on Tue Jun 08, 2010 11:14 pm, edited 2 times in total.

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Post by Brightspot » Sun Jun 06, 2010 10:09 pm

You might want to give your doctor a copy of this artlcle posted by Cheerleader!

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Post by jackiejay » Mon Jun 07, 2010 5:10 am

I like it a lot.....although, if as stats are starting to show (Dr. McDonald's, for example), that 90% of MS patients have CCSVI...I would say regardless of symptoms, they all should be tested.....some relapsing remitting patients might not have many symptoms yet....their problem could be more insiduous...iron deposition taking place, which doesn't always show the more obvious symptoms but nevertheless is building up and causing damage to the CNS.......would have to add that into the mix, if need be.....great job though, thanks for setting up the format.

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Post by Trike » Mon Jun 07, 2010 5:34 am

Good morning, I watched W5 on the weekend and they did a docu' on
CCVIS.... well done. W5 showed us our biggest road block in Canada is the Can. MS Society... the "head neuro' " from Ottawa who spoke for the Society said everything about the Zamboni treatment was no good and it was a waste of good reseach $dollars.... and it diverts funds away from other worth while projects....
So the problem with this is our gov't's deffer to the Canadian MS Society.
How do we do an "end run" around the MS Society ? In Ontario, go to
the $money$.... go to your mpp. If your like me your on a raft of drugs and how many are funded through Trillum (gov't) and how about disability.
Tell them how much $money$ they are going to save by helping us help oursleves. Convince your mpp. to push your letter and their support up to the Minister of Health. The money is the only thing which trumps the
MS Society.....

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Post by 1eye » Mon Jun 07, 2010 2:31 pm

Tell the Federal Health Minster NOT to (she calls them the 'MS Association', perhaps a reference to neurolgy?) give them the $10 million, under any circumstances, because they DO NOT represent persons with CCSVI and MS!
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

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Post by garyak » Mon Jun 07, 2010 3:52 pm

Last night my wife and I were strategizing on how to approach my G.P. in this exact same way. Thanks as this post will help me be more effective in this regard. We also saw the W5 show on the weekend and that ottawa neuro was a real jerk.

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Post by Brightspot » Tue Jun 08, 2010 10:36 pm

I believe that by putting things in writing to our doctors we will apply pressure for them to be accountable when they prevent us from receiving appropriate testing and treatment of vascular conditions on the basis that we have MS.

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Post by iggy » Thu Jun 10, 2010 11:52 am

bump - this is an excellent strategic plan!

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