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Dear Sirs,
I have been through most all the Multiple Sclerosis drugs on the market so far with the exception of Tysabri and the newest “oral” drugs, which are said to be no safer, just “easier” for some MS patients to swallow than self injecting. But the side effects of these drugs are still truly frightening.
I have lost a good friend, Linda, from Leukemia in 1991, she died after she was on the drug named Imuran, which was used to suppress white blood cells. My minister’s son-in-law, just finished his awful Cancer treatments to counter act the Leukemia he got from his MS drug, Copaxone. It has cost his young family a tremendous financial price in lost income, astronomical hospital costs, not even to mention Mark’s emotional and physical health, etc.
It’s just unconscionable to me that MS patients are offered these drugs and nothing else when they see their MS Specialists. And that the risks from the side effects is downplayed. The Avonex I was on darn near gave me Leukemia as well before I stopped the injections. My white blood cell count was dangerously down.
I have continued to progress in spite of these drugs. I have also tried some of the “fringe” ideas, the Prokarin Patch, the Swank Diet and later the Candida Diet. The diets on the other hand made me feel healthier and I lost weight, but they don’t seem to be the complete answer either. And as you would expect, the fringe approaches had less than satisfactory results as far as MS progression goes.
Through the research work of Dr. Zamboni in Italy and the work being done in Poland by Dr. Simka many discoveries about Multiple Sclerosis and the human venous system have been identified. Past work by researchers has also pointed to a venous involvement in Multiple Sclerosis, this is nothing new!
There are researchers all over the globe working on the “Multiple Sclerosis Puzzle” now, more so than in the last few decades, and they are sharing their findings. This is monumental effort from MANY specialties that are coming together to find answers.
This is where your energies should be directed, in helping this research move forward, not halt it’s progress.
On a personal note, because I became aware of CCSVI Research, I have had the MRI & MRV completed at Stanford University, in CA, USA. I was found to have a type of anatomical variant along with ischemic problems through the posterior blood supply to the brain, which are the vertebral-basilar arteries. There is bilateral evidence of jugular obstruction with multiple collaterals noted more prominently on the right side. In addition, findings infer the possibility of valvular abnormalities as the cusps of both jugular valves appear very prominent. It was also noted in later cervical x-rays performed in Missoula, MT, USA, that I have a head tilt to the left and a side slip of atlas to the right with left posterior rotation.
None of this has ever been addressed in all my 17 years of MS treatment and previous MRI’s and x-rays. So I have now had the good fortune of having three independent professionals read my current MRI, MRV & Cervical X-rays. One in New York, one in Montana and one in California and they all concur, I have Venous issues!!
If I were fortunate enough to be able to have Dr. Simka in Poland perform my angioplasty, I wouldn’t hesitate. Unfortunately, that kind of travel and expense are not available to me. I am currently awaiting a CCSVI Trial here in the US.
This research is making great strides into understanding this disease. Be part of the solution and the discoveries, not a road block.
Multiple Sclerosis patients don’t need protected, they need answers and I truly don’t believe that drugs are the end all answer. A part of the puzzle perhaps, but not the answer.
Let’s get to the CAUSE of MS, then we will have answers!!
In the mean time I’ll get Upper Cervical Chiropractic correction to improve my arterial and venous flows as well as cerebrospinal fluid flow. My next step will be to enroll in a CCSVI Trial, as soon as one becomes available.
What I absolutely won’t do is try any more pharmaceuticals.
Respectfully,
Lora
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