Yvonne Andersen from Truro, Nova Scotia is 52 and since being liberated herself is campaigning vigorously for the right of all Canadian MS’ers to receive the treatment here at home. We discussed her MS journey.
“My first symptom started in January 2000. I had an extreme bout of vertigo that was misdiagnosed as an inner ear infection. I was dizzy for three weeks and spent my days holding walls to get around the apartment that I was living in.” she recalls, “After those 3 weeks the severity of the vertigo went away, but I always felt as though something wasn’t quite right. I felt like I was in a world where everything was moving around me and I was just there or I was stumbling to get out of the way all the time. I had days that I was okay, but when I was tired it seemed to be worse.
“In June 2003 I developed a numb area on my torso. My family doctor told me that he felt that I had MS. Not knowing anything about MS, I immediately started to do the research. Eight months later, February 2004, I had an appointment with the neurologist and by that time I was very concerned. The neurologist told me that he would schedule an MRI to determine whether or not I had MS, but he also wanted to test me for other things such as Lupus, Rheumetory Arthritis and Lyme disease.
Yvonne Andersen from Truro, Nova Scotia is 52 and since being liberated herself is campaigning vigorously for the right of all Canadian MS’ers
“I had the MRI in February but was not scheduled to see the neurologist until August for the results. In the meantime my husband had become very ill and was diagnosed with Stage IV Melanoma. Ten weeks later on July 11, 2004 he died. Two months after that I had another attack that caused severe pain in my torso, known as the MS hug. I was given IV steroids for 5 days to reduce the inflammation that the neurologist felt was causing the pain. (Stress causes MS attacks, and my grief and the stress of losing my husband brought on this attack).
“In August 2004 I went for the results of my MRI and was told that although I had previously had 2 attacks, (vertigo, MS hug), I did not have the required 9 lesions for a diagnosis of MS. I was given a prescription for pain meds and told to come back the next year for a follow up appointment.
“In October 2007, I was driving home in the rain one night and my vision suddenly went blurred and doubled. I phoned my doctor the next day and he phoned my neurologist. I was again put on IV steroids, but for 3 days this time. The vision mostly cleared up and I was scheduled for another MRI. In March 2008 the results still did not give me a confirmed diagnosis because I only had 7 lesions. At this point, my neurologist was certain that I had MS and he suggested that I have a Spinal Tap which would give us conclusive results and a diagnosis. I agreed and was then diagnosed in April 2008 with Relapsing Remitting MS.
“At that point my family knew that an eventual diagnosis was coming and I feel that they were fairly prepared for it. I have to mention that my family is also quite a distance away from where I live so they did not see me on a regular basis.
“I had begun dating in January 2007 and was worried about the pressure that I would be putting on my now live in boyfriend when the inevitable happened and I was in a wheelchair or worse as my MS progressed. I gave him the choice to leave when I got the diagnosis and he asked me if I would leave him if he was ill. The answer to that question was easy for me as I realized that it was also easy for him regarding me.”
Like other MS’ers Yvonne’s range of symptoms was extensive: Lack of balance, foot drop, MS hug, spasms, hearing difficulties, numbness, spasticity, cramping, weakness, cold hands and feet, intense itching, memory issues, cog fog, fatigue, tremors, blurred vision – the list goes on.
“I was working as an employment counselor for persons with disabilities for 13 months and in January 2010 I had to resign from that position after realizing that I could no longer function at work without falling asleep or drinking 2-3 pots of coffee per day to function enough to make it through the day. I realized that I was not doing the clients justice and I was not able to concentrate on my job because of fatigue and pain.”
During the short time between her diagnosis and her liberation Yvonne estimates that her medications have cost in the region of $46,000.
“I am very fortunate in the fact that Nova Scotia will pay for the injectable medications for MS. My pain medications which I had been taking for over five years were $325.00 per month which I had to pay for myself.
“When I first heard of CCSVI, the theory made sense to me. I was excited that something as simple as angioplasty could possibly help with my fatigue, my pain and my vertigo. I cried with relief that there was a possibility to help with my quality of life and to make me feel better.”
Yvonne, like many others in her position then embarked on research. “I searched for the names of people who I had heard about who had gone to Poland for the procedure and found a few on Facebook. I had started with just family and friends on my Facebook and within 4 months I had developed a community of MS’ers totaling over 500 who either were interested in the procedure or who had already had it done. I followed closely the improvements of those who had the procedure and what they were experiencing and decided to have the treatment myself..”
Yvonne travelled to New York state to have her treatment at a cost of over $8,000 including air fair, hotels etc. This cost was covered by fundraising, something she was acutely aware of when embarking on this journey.
“I had many people help me with fundraising to be able to go for the procedure so my anxiety level was quite high because I was nervous about disappointing those people if I did not have improvements with my MS symptoms. For myself I only wanted to stop the progression that I knew was happening within my body for the past year and I hoped that the pain that I experienced with my MS would diminish to a tolerable level without the use of the pain meds that caused so many side effects.”
So what was the result of the treatment for Yvonne?
“I have been totally overwhelmed with the results of the CCSVI treatment on my symptoms. I have seen improvement in all of my symptoms with the greatest improvement being my cognitive problems such as word searching, memory recall and concentration. Also in the greatest improvement list would be the extreme fatigue that I experienced before the procedure. I had been sleeping 16 hours a day because of the fatigue and am now awake and active 16 hours a day. This has greatly improved my quality of life. My balance is much better than what it was before and my drop foot is gone. One of the symptoms that I wanted to be gone totally is not. The pain in my torso that I was experiencing before angioplasty is still there. But, the degree of that pain is so much less that I am only using Tylenol twice a day instead of the very expensive drugs given to me by my neurologist. These drugs only kept the pain at bay on the good days On the bad days they did nothing. The MS hug is also gone.
Yvonne continues, “I am extremely pleased that I had the angioplasty procedure. For weeks after the procedure I was so emotional as I discovered on a daily basis things that I had never thought of before that I was now able to do. When I realized I was able to stand up in the shower to shave my legs, I was thrilled! I am able to shoulder check when driving without getting dizzy. I am able to walk through a grocery store without using a shopping cart for balance. I can ride my bicycle which is is something I haven’t been able to do for at least five years.”
Because yvonne is so active in campaigning for fellow MS’ers we had to ask her what she felt the Canadian government and the MS Society should be doing regarding offering Canadians the opportunity to have this treatment.
“At the beginning of the CCSVI issue I understood the Canadian government being cautious and wanting studies to be done. I assumed that those studies would include doing the actual procedure and following the patients for a period of time. I also assumed that the Canadian MS Society would “want” to help MS’ers. I also assumed that neurologists would want to help and would jump right on this to give us the very best in treatment. I was so very disappointed when I realized that the MS Society would start in the foot dragging, the neurologists followed and then the Canadian government was right on board with both of them. It makes one wonder who has a hold on whom? Is it the pharmaceuticals that have the biggest hold on all of the above? If that is the case then who is allowing that to happen?
“Are neurologists and the MS Society that far indebted to the pharmaceutical companies for their enriched way of life? Shouldn’t the neurologists and the MS Society be fighting for a cure? Isn’t that the new slogan for the MS Society? EndMS………
“The MS Society no longer represents me and no longer represents the thousands of MS’ers who have gone against their advice and have had this procedure done. We, the thousands who have had the procedure know that it will give us our quality of life back. The MS Society and our government need to find us, contact us and listen to our stories. They need to hear what this procedure has given back to us in our lives. They need to listen to our family and friends and hear what differences they, the people who see us every day, see in us.”