Plea to BC College of Physicians and Surgeons

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Plea to BC College of Physicians and Surgeons

Postby Johnson » Sat Apr 24, 2010 12:40 pm

I cannot remember who inspired this, and provided the e-mail address, but this is a note that I wrote to the BC College of Physicians and Surgeons yesterday.

For your edification:
To Whom it may concern,

My name is Johnson. I am male, 48 years old, and have had MS since 1993 (clinically). I have some concerns and questions that I hope someone might address. I appreciate any indulgence.

I became aware of the Chronic Cerebro-Spinal Venous Insufficiency theory in November of 2009, as so many else did. I understand that there is a great deal of interest, and controversy around it, and I am sure that the College is getting all manner of related questions and diatribes. The theory made sense to me immediately. I do not believe that it is the end of MS, but it did prompt me to have colour Doppler ultrasound, and an MRV, which I paid for at a private clinic, as I was unable to gain a requisition or referral in the public system. I have no objection to that, as it was, at that time, not clearly indicated that such testing was warranted in people with MS. Of course, the BNAC study, Dr. Marian Simka, et al have documented an approximate 90% correlation, Zamboni, 100%, the Kuwait initiative is very strongly indicative...

Although I understand that The College of Physicians and Surgeons has no obligation to me - as a dis-eased layperson, I wonder if I might interrogate the BCCPS' position on whether treatment for inhibited cerebral drainage is warranted, and endorsed - especially for people such as myself, who have a diminished quality of life - that is getting worse, and to whom no other treatment has been advised, or offered.

In my own screening, it was determined that;

- My Internal Jugular Veins are severely constricted bilaterally, have faulty valves, turbulence, and reflux.

- The IJVs do not collapse while sitting or standing, but remain engorged with putrefying blood.

- There is an "extraordinary number" of collateral veins from my thyroid.

- Lots of other interesting stuff too, such as a venous angioma in the brain that was not there two years ago - in absence of any head trauma whatsoever.

My biggest problems are cognitive dysfunction, balance problems, visual problems, and extreme - and accelerating - weight loss. My MRV scan shows that the thyroid vein collaterals are trying to drain into blocked jugular veins. I was referred to an Interventional Radiologist in BC for selective venography, but after performing two very successful balloon angioplasty procedures on two people with CCSVI, he was apparently halted, and my referral to him deferred.

I wonder if the BCCPS might be able to assist me in finding treatment. I believe that I will soon die from weight-loss if my thyroid cannot drain stale blood effectively. I can feel my brain dying in my diminished ability to mentate, and to function bodily. I need help, but I am repeatedly referred to the neurology department at UBC for my venous issues. There is a break down in the system, and I am being refused treatment because I have a dis-ease of unknown aetiology (though it has been studied by neurologists for at least 6 decades). I do not expect to be sent to a neurologist for venous issues any more than I expect to be sent to an Otologist for a skin rash. Please, I need the help of someone knowledgeable, and capable in treating venous issues.

I have now been pushed to seek treatment abroad, as the treatment is being hindered here in the country where my taxes pay for a public medical system staffed largely by tax payer funded clinicians. How will I acquire follow-up care when I return? Will I be refused treatment again? Will I have to return over-seas? Will I be allowed to die because I have MS, and vascular problems are not proven to be related by double-blinded clinical trials?

Please advise. Thank you.

Sincerely yours,

Johnson
My name is not really Johnson. MSed up since 1993
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Postby babiezuique » Sat Apr 24, 2010 6:37 pm

Johnson, your letter is very well write, i'm sure you will receive some answer...

What you are describing here is very touching, you are a very articulate and funny man... I want you to know that to have you here and to read your post helped me a lot!

I'm actually working on like you to have answer here in Quebec. I fund a Cardiologist here in a private clinic, I'll try monday to have an apointement with him..to see if a could not have a better entry in the vascular field, as you know ms is worst than a stigmat in our face that does not help whit this new vascular paradygm.

Let us keep working!

Barbara
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Postby Asher » Sun Apr 25, 2010 11:16 am

If this is who you are while suffering from “cognitive dysfunction”, I wonder who you were before you have contracted your “dis-ease”. You are an impressive human being and I wish you lthe best of uck and ease :)
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Re: Plea to BC College of Physicians and Surgeons

Postby sbr487 » Sun Apr 25, 2010 11:29 am

Johnson wrote:I cannot remember who inspired this, and provided the e-mail address, but this is a note that I wrote to the BC College of Physicians and Surgeons yesterday.

For your edification:
To Whom it may concern,

My name is Johnson. I am male, 48 years old, and have had MS since 1993 (clinically). I have some concerns and questions that I hope someone might address. I appreciate any indulgence.

I became aware of the Chronic Cerebro-Spinal Venous Insufficiency theory in November of 2009, as so many else did. I understand that there is a great deal of interest, and controversy around it, and I am sure that the College is getting all manner of related questions and diatribes. The theory made sense to me immediately. I do not believe that it is the end of MS, but it did prompt me to have colour Doppler ultrasound, and an MRV, which I paid for at a private clinic, as I was unable to gain a requisition or referral in the public system. I have no objection to that, as it was, at that time, not clearly indicated that such testing was warranted in people with MS. Of course, the BNAC study, Dr. Marian Simka, et al have documented an approximate 90% correlation, Zamboni, 100%, the Kuwait initiative is very strongly indicative...

Although I understand that The College of Physicians and Surgeons has no obligation to me - as a dis-eased layperson, I wonder if I might interrogate the BCCPS' position on whether treatment for inhibited cerebral drainage is warranted, and endorsed - especially for people such as myself, who have a diminished quality of life - that is getting worse, and to whom no other treatment has been advised, or offered.

In my own screening, it was determined that;

- My Internal Jugular Veins are severely constricted bilaterally, have faulty valves, turbulence, and reflux.

- The IJVs do not collapse while sitting or standing, but remain engorged with putrefying blood.

- There is an "extraordinary number" of collateral veins from my thyroid.

- Lots of other interesting stuff too, such as a venous angioma in the brain that was not there two years ago - in absence of any head trauma whatsoever.

My biggest problems are cognitive dysfunction, balance problems, visual problems, and extreme - and accelerating - weight loss. My MRV scan shows that the thyroid vein collaterals are trying to drain into blocked jugular veins. I was referred to an Interventional Radiologist in BC for selective venography, but after performing two very successful balloon angioplasty procedures on two people with CCSVI, he was apparently halted, and my referral to him deferred.

I wonder if the BCCPS might be able to assist me in finding treatment. I believe that I will soon die from weight-loss if my thyroid cannot drain stale blood effectively. I can feel my brain dying in my diminished ability to mentate, and to function bodily. I need help, but I am repeatedly referred to the neurology department at UBC for my venous issues. There is a break down in the system, and I am being refused treatment because I have a dis-ease of unknown aetiology (though it has been studied by neurologists for at least 6 decades). I do not expect to be sent to a neurologist for venous issues any more than I expect to be sent to an Otologist for a skin rash. Please, I need the help of someone knowledgeable, and capable in treating venous issues.

I have now been pushed to seek treatment abroad, as the treatment is being hindered here in the country where my taxes pay for a public medical system staffed largely by tax payer funded clinicians. How will I acquire follow-up care when I return? Will I be refused treatment again? Will I have to return over-seas? Will I be allowed to die because I have MS, and vascular problems are not proven to be related by double-blinded clinical trials?

Please advise. Thank you.

Sincerely yours,

Johnson


Dear Johnson,
Its important to stay positive. Its my experience that just when we think all is lost, things tend to turn around for good. Remember that sometime till the end of 2009, there was no hope. Fast forward and see the difference today.

Take care ...
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Postby esta » Sun Apr 25, 2010 7:36 pm

Hi Johnson
brilliantly put forward, it will be very curious how they will answer you...
esta
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