Wednesday, June 30, 2010

Yay, yay, four weeks from today

Four weeks from today, I will go in for my Liberation Treatment a/k/a venous angioplasty for the condition known as CCSVI. God bless the brave doctors and hospitals that are treating and allowing treatment to continue for those who seek it. I am very excited to see what my results will be.

I've had a lot of problems with my hands recently. Although they have been numb for 8 years, recently the right hand curls into a tight fist and left one feeels like rubber bands want to curl those fingers inward too. Makes it really hard to eat. I can't get this treatment fast enough.

Lots of neck/back pain and my left leg more sluggish than usual. Maybe today's PT session will help - those sessions really kick my butt.

Not much more for today - thanks for following - Blessings for everyone.


Thursday, June 24, 2010


In early March, my Mom sent me a tiny newspaper clipping about a new treatment for MS. I set it down and a few days later, skeptically decided to investigate online. I was amazed at what I found and immediately began a quest to obtain this treatment for myself. It took me three months of daily 5-8 hour computer sessions, doggedly pursuing leads, researching, networking and getting on any and all lists before I could to get my appointment which was, at that time, two months away (currently it’s 5 weeks from today).

More Background:

After my initial and dramatic onset, I slowly healed but never got back the feeling in my hands (they are numb) and was never able to shake the crippling fatigue, so common in this illness, or the immense neck pain I feel almost daily. For about 5 ½ years [from 2002-07], I did OK, meaning my mobility was intact and most people couldn’t tell I had MS. Then things took a dramatic downward turn, and my walking was severely affected. I began to wall-walk and then to use a cane, now a walker and wheelchair.

I used to think it was a real cute saying, “I have MS, but it doesn’t have me” – I even got a t-shirt that said it. Now I know it’s bullshit. When you have MS, it DOES HAVE YOU, and at it’s whim, it will take you down and keep you there, make you suffer tremendously and push you to limits you never knew could be pushed to. It is a maniacal demon, a hideous beast that keeps you constantly terrified, not only for yourself, but for all those who care about you.

In early 2009, my MS Specialist Neurologist told me that I needed chemotherapy - that it was my last and only option because the ABCR drugs would not work for me, my MS was advancing too fast. I looked into chemo-alternative and traveled to California and worked with an excellent MD/naturopath. His methods didn’t do much for me (now we know why - no vitamin or supplement therapy in the world could help me if I had crunched veins in my head). I have made 4 visits to San Diego over the past year and continued to struggle and decline. Then my loving Mother sent me the newspaper clipping and put me on the path to be Liberated. Five weeks can’t go by fast enough for me! Stay tuned!

Tuesday, June 22, 2010

Dr. Zamboni, CCSVI & The Liberation Procedure EXPLAINED


Italian doctor may have found surprisingly simple cure for Multiple Sclerosis
By Loz Blain
00:38 November 26, 2009

An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamboni took 65 patients with relapsing-remitting MS, performed a simple operation to unblock restricted bloodflow out of the brain - and two years after the surgery, 73% of the patients had no symptoms. Dr. Zamboni's thinking could turn the current understanding of MS on its head, and offer many sufferers a complete cure.
Multiple sclerosis, or MS, has long been regarded as a life sentence of debilitating nerve degeneration. More common in females, the disease affects an estimated 2.5 million people around the world, causing physical and mental disabilities that can gradually destroy a patient's quality of life.
It's generally accepted that there's no cure for MS, only treatments that mitigate the symptoms - but a new way of looking at the disease has opened the door to a simple treatment that is causing radical improvements in a small sample of sufferers.
Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.
Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?
He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.
He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.
He named the problem Chronic Cerebro-Spinal Venous Insufficiency, or CCSVI.
Zamboni immediately scheduled his wife for a simple operation to unblock the veins - a catheter was threaded up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage. It's a standard and relatively risk-free operation - and the results were immediate. In the three years since the surgery, Dr. Zamboni's wife has not had an attack.
Widening out his study, Dr. Zamboni then tried the same operation on a group of 65 MS-sufferers, identifying blood drainage blockages in the brain and unblocking them - and more than 73% of the patients are completely free of the symptoms of MS, two years after the operation.
In some cases, a balloon is not enough to fully open the vein channel, which collapses either as soon as the balloon is removed, or sometime later. In these cases, a metal stent can easily be used, which remains in place holding the vein open permanently.
Dr. Zamboni's lucky find is yet to be accepted by the medical community, which is traditionally slow to accept revolutionary ideas. Still, most agree that while further study needs to be undertaken before this is looked upon as a cure for MS, the results thus far have been very positive.
Naturally, support groups for MS sufferers are buzzing with the news that a simple operation could free patients from what they have always been told would be a lifelong affliction, and further studies are being undertaken by researchers around the world hoping to confirm the link between CCSVI and MS, and open the door for the treatment to become available for sufferers worldwide.
It's certainly a very exciting find for MS sufferers, as it represents a possible complete cure, as opposed to an ongoing treatment of symptoms. We wish Dr. Zamboni and the various teams looking further into this issue the best of luck.
Via The Globe and Mail.

Wednesday, June 16, 2010



Much thanks to my wonderful new friend Diana from Ontario, Canada who unselfishly shared her info with me and stuck with me to help make this happen – my heart is filled with gratitude – Thanks Diana.

HOW IT ALL STARTED: In June 2002, my life was as crazy as it had ever been. I was a full-time student, a part-time worker, and a full-time Mom to Alyssa 13, Amara 11, and Brett 7. I was on two Boards at our church which met regularly for meetings, was on the planning committee for Vacation Bible School as well as a teacher in this program, was a Sunday School Teacher and was active in Boy Scouts and other school activities. In my spare time, I baked cakes (for parties and weddings). I am exhausted just from typing this – imagine how I was when I was LIVING IT. Anyway, on Wednesday, June 26, I woke up and my legs felt numb, pins & needles. I ignored it, thought I must have pinched a nerve or something and continued my day. It got worse, especially at night. The numbness moved up my body until all my skin from the neck down felt numb. The numbness progressed to stiffness and then, over the course of the next couple weeks, paralysis. I was terrified – it felt like a hand from hell came up out of the ground, grabbed me and pulled my face down into the dirt. Five Emergency Room visits later, doctors came in to my hospital room and told me I had MS. I thought they were nuts, I KNEW MS, my sister had it – this was NOT MS. Steroids loosened up my muscles but brought on as many problems as they “fixed”. I had a miserable summer and was sick into the fall. One year later, my diagnosis was definite – I had MS.

Wednesday, June 9, 2010


My name is Robin and I was stricken with MS eight years ago at the age of 41.

I know a lot about this disease, since my beloved sister, Michele, passsed away from it 6 years ago. She suffered with it for 25 years; she was 47 and completely paralyzed when she died. For 25 years, MS took a piece of her every year until she could no longer move, see, and finally, breathe. She was an awesome person and I still miss her badly. In the last two years of her life, I visited with her once a week and we shared many things. I would cook for her, read to her, share funny stories or just sit together with her to watch TV (what she could see of it with her failing eyesight). We made each other laugh every time I was with her. At her memorial service, I watched as each of my other 6 siblings shared memories of her, but I couldn't share any; it was just too painful, so I just spoke about the Blessings that are present in our lives at all times, we just have to look for them, they're there.

Of my parents' nine kids (seven girls and two boys/1 boy surviving), just two of us girls, Michele and I got MS.

I have been married to my wonderful husband, Mark, for 24 years. We have three children and one grandchild. I am blessed to have these awesome people in my life.

I want to be liberated from this disease and from the wheelchair and walker I now use. I'm on a mission to do this. Stay tuned.