Sebastien Gishin Cyr

This letter is intended to be distributed to the general public so that people can know exactly what patients with multiple sclerosis experience in 2011.

My name is Sebastien Cyr I currently reside in the city of Saint-Jerome in the province... of Quebec, Canada. I am now 36 years old married and the father of a soon to be 3 year old daughter. I was diagnosed with multiple sclerosis in October 2008. Previous to the crisis that led to my diagnostic I only had sporadic stiffness’s that would come and go once in a while that I would attribute to my weekly training in martial-arts. The only event in my life that could be related to multiple sclerosis was when I was 9 years old and my left leg go so stiff it could not be used added with an excruciating burning pain. Doctors in those days could not figure what it was and when it went away no further investigation was done. This problem actually never came back until 2008.

The neurologist that was assigned to me just labelled me as being afflicted with multiple sclerosis without any further testing and investigation in order to properly rule out other diseases that will present the same brain and spinal cord lesions as multiple sclerosis. So from there I was prescribed immunomodulators. First it was Betaseron in November 2008, Tysabri in February 2010, Copaxone in May 2010 and Betaseron once again in November 2010. Each time the drugs were never able to prevent a relapse as intended. Needless to say all those injections carry horrible side effects that can lead to death like Tysabri is known for and spreads fear in the multiple sclerosis community.

Each time I had a relapse I was put on high dose cortisone in order to limit the damage done with various levels of success. Considering that the known injections are a failure in my case did the neurologist ever considered known alternative treatments like Plasmapheresis, cyclophosphamide, azathioprine, total lymphoid irradiation, hyperbaric oxygen, intravenous gamma globulin, and antilymphocyte globulin or Low dose Naltrexone? No on my last relapse all she suggested was for me to try Tysabri again or Rebif. Why not do all you can for a patient that is now losing the usage of his hands to the point self grooming, eating, driving is severely impaired?

Now at the end of 2009 the C.C.S.V.I theory by the Italian doctor Paolo Zamboni was presented. After investigation of the theory and the success of this intervention on many patients worldwide we decided I had to try it and went at the Ameds Centrum clinic in November 2010. The procedure alleviated many of my symptoms but 2 months later I went into a sever relapse rendering me unable to properly use my hands, write, take care of my daughter, drive and walk properly. My assigned neurologist put me on another high dose of cortisone with no success this time and none of the known alternative therapies were suggested. Also proper investigation to see if the veins on which the intervention had been practiced were once again blocked was never done or considered.

At this point we will spend our last saved money in order to seek proper diagnostic and a second intervention to stop the progression of my disease and possibly reverse some of my losses. If this procedure fails and none of the known alternatives are provided to me by my assigned neurologist I will no slowly decline up to being in a bed 24 hours a day or in a wheel chair without the use of my hands. Drastic actions will be taken and I will seek euthanasia in one of the known clinics in Europe. It is my choice not to impose undue stress to my family all because the CCSVI intervention is not practiced in Canada and that neurologists only prescribe commercial drugs that have been exposed in several studies s inefficient and dangerous.

Please pass this one around. I hope this will reach enough people to make a change.

http://www.facebook.com/notes/ginger-macqueen/a-great-letter-to-pass-around/10150089805029600?ref=notif&notif_t=note_tag