Well worth a read..

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Well worth a read..

Post by PCakes » Sat Jul 03, 2010 7:59 pm

copy and paste from NYT comments with a thank you to the author..

It is so easy for doctors, researchers, and people without a debilitating disorder to say that research and new treatments and/or drugs take time to research and develop. It is easy and callous to say that the afflicted should wait years (or decades) for that to happen.

I was diagnosed August 2006 with probable Relapsing Remitting Multiple Sclerosis. After 3 years of self-injections of 2 different (and VERY expensive) MS medications, steroids, pain/muscle spasticity medications, unnecessary surgery to remove a disc in my neck based on 1 neurologist’s suggestion, and complementary supplements/treatments, my disability dramatically and quickly progressed.

In June 2009, I was finally diagnosed with Primary Progressive Multiple Sclerosis. PPMS is the most progressive form of MS and has no treatment. I was walking when I was initially diagnosed in 2006. I quickly progressed to falling (resulting in broken bones), urinary incontinence, pain, heat/cold/moisture intolerance, no balance or coordination, headaches, muscle spasms, difficulty breathing, and a number of other painful and demoralizing problems. I started limping, progressed to using a cane, then a rolling walker, then a wheelchair.

I am currently on a waiting list for a clinic in Scotland that is testing MS patients for Chronic Cerebro-Spinal Venous Insufficiency and then sending those patients to another clinic for the angioplasty. I pray that I don’t become a vegetable or die of respiratory or heart failure before I can be seen. I have contacted vascular surgeons in my town and have received no replies to my inquiries regarding this disorder and whether or not they can help me.

CCSVI makes a lot of sense and could very well be the key to treating the symptoms of MS. It is a shame that our country provides no hope or relief for patients that have no other options and nothing to lose by trying this procedure. There is VERY LITTLE risk and millions of people worldwide who would volunteer or pay to be participants of CCSVI and stem cell treatments. Stem cell treatment (and NO, not fetal stem cells to those puritanical naysayers in our country) may be the only hope to patients like me who have extensive damage to the insulating myelin shealth around the nerves. CCSVI treatment may slow or halt the progression of MS, but stem cells could reverse damage already done.

I also take exception to the statements that MS primarily affects light skinned people of northern European descent. There are more and more people of all skin colors and nationality being diagnosed with MS. It appears that MS could be linked to environmental or infectious agents, or CCSVI, and not a lack of vitamin D. Vitamin D may play a role, but I have been tested for vitamin D deficiency and found to have normal levels.

I also take exception to the National Multiple Sclerosis Society estimate that 400,000 Americans have MS. That figure has not changed since I was diagnosed in 2006. I find it hard to believe that more Americans are not affected. I also think the worldwide figure of MS patients is woefully low.

Until big business (pharmaceutical companies, health insurance companies), and the politicians/doctors ( who are in the pockets of those businesses) are prohibited from profiting off of the misery of patients, I don’t believe cures for many diseases are possible. There is no profit in a cure, only treatments that may or may not be effective. Neurologists profit greatly by prescribing approved MS “CRAB” drugs that only have a 25% – 33% chance of SLOWING MS progression, according to the very pharmaceutical companies that manufacture them!

It is time for America to wake up and demand that drugs and treatments be tested in a timely manner on willing participants. Animal testing is cruel and ineffective. Animal and human physiology is not even close to being comparable!

— Carolyn Sell

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Post by Nasti » Sun Jul 04, 2010 3:09 am


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Post by belsadie » Sun Jul 04, 2010 4:19 am

That's all of it....in a nutshell. You hit the nail on the head! The powers that be won't know what hit them. I'm tired of emptying my pockets just to fill the unethical ones of the profiteers. I wonder how many boats/cars/vacation homes have been bought on the backs of those suffering from MS, not to mention the myriad other illnesses with "no cure".
Boy, am I sick of this!.........................................

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Post by walcat » Mon Jul 05, 2010 7:07 am

That was a very good comment! I had given up on ANYTHING to help MS, I stopped my med's 4-5 yrs ago I haven't even seen my neurologist in about 2 years. Now I have something that's gives me hope - CCSVI!

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Post by soapdiva884 » Fri Dec 17, 2010 4:01 pm

Yaaaaaaaay for Carolyn and I hope she gets tested and treated before it is too late!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

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