Hello to my fellow MS'rs. I have never written in before, but I have read enough to know that I feel comfortable enough to share my story with all of you.
I was diagnosed on Nov 21/2008. I had a career in a research lab, and I new things were not quite right when my right arm tremored really badly. I had a very difficult time holding my scalpel, and then my balance started to suffer. All of a sudden the fatigue and choking started to make more sense.
Having just gone through an awful divorce, and finally being able to see the light of day, I thought the bad stuff was behind me. Little did I know.
Mom and myself went to the Saskatoon City Hospital to the MS Clinic for my extreme vertigo, and the only thing Dr. Knox did for me was say that I looked handicapped, and the only hope that I had because of her observation of the way I operated my wheelchair, was a scooter.
That November 2010 was my first CCSVI in Bulgaria. My pain went away in my legs completely and I could speak without slurring my words. The procedure went well, not all symptoms were gone, but I was pain free, and I could speak clearly again. Wow.
My walking was still bad, lots of vertigo, I tremor so badly eating is rather entertaining, and I dont dare go through my day without my little blue pill. On the flip side of this though....my little ones are healthy, and my family loves me.
In May 2011 the pain was back and mom and I were off to Costa Mesa, California were I had my second CCSVI procedure done. Once again, all went well and the pain had gone away. I was praying for more symptoms to be relieved this time, but no such luck. I was pain free though, with no awful drugs I have always refused to take. Pain or not, "mom" is a very important job.
In desperation of trying to rid myself of these awful symptoms, I had researched the power of Adipose Autologus Mesenchymal Stem Cells. I found the Stem Cell Institute in Panama City, Panama. That turned out to be a very expensive life lesson. I had a liposuction done, and the Institute cleaned and prepared my own Stem Cells for re-administration. Without my knowledge, the Stem Cell Institute in Panama changed the procedure and did not offer any Intra-thecal [spinal] injections, and my own stem cells were contaminated. After doing what I did for 11 years, I gaurantee you that stem cells are sterile until they are contaminated by human interference. I spent more than $20,000 on this dream of playing with my children, and going to thier activities without my wheelchair. Until something better comes along, I will continue taking my LDN and the Fampyra that is supposed to aid with my walking ability. It has been 3 weeks and I am getting very impatient.
There is a ray of hope though, and this is the place I choose to donate my money to, instead of the MS Society. There is a place in Saratoga, California called The Myelin Repair Foundation. Scott Johnson is the Founder and CEO of this Foundation. He was diagnosed with MS in1976, and when he saw the travisties that were occuring, he decided to do something about it. Phase 3 trials are scheduled to be completed in 2014. This will be the first medication that will stimulate myelin repair. The more research I do, the more excited I am.
Like everyone that is reading this, we share something in common. A humiliating and debilitating disease that is without a doubt...life changing. I would be very ignorant to think that I am also the only one living with this disease. We are only as strong as the shoulders we stand on. There isn't a day that goes by that I don't thank my lucky stars for all the people in my life that care and love me so dearly. It is not easy for them either, and for them, I am grateful.
Like I always say to my children...."My legs don't work, but my arms do!".....I need a hug.
Hang in there everybody! Cheers Joanne