It has been a long time since I last wrote a blog. So much has happened in our daily life; over all things are pretty awesome. The MS slowly progresses though, presenting new decisions and challenges. Yes, I am taking the best care of myself and doing all the right things but I am weaker and admittedly somewhat concerned about my physical well-being. I know all the worrying in the world won’t change what the future holds so I/we (that is me and my greatest cheerleader, Steve) carry on with positive thoughts, heartfelt prayers, the ability to adapt, the highest of hopes and a sense of humour.
I believe I have given the Weldon Protocol for Chlamydia Pneumonia a fair try…with little to no improvement in my MS symptoms. After a year on three different antibiotics my gut finally told me to give up. I can report that I have more feeling in my feet, unfortunately it isn’t a good feeling. It is like when your feet fall asleep and then start to wake up. Yes, that is how they feel all the time! My feet are definitely more sensitive to everything, specifically anything painful. I used to love being barefoot, it was very grounding. Now I wear shoes all day to protect my tender tootsies. What is even more sad is my shoes are sensible (in other words ugly & boring). So much for sexy, summer sandals!
The real reason I am writing is to let you know that I have recently been working every angle I could to participate in an upcoming international mesenchymal stem cell trial. Unfortunately my most recent MRI showed “no activity’ thus I have been rejected as a candidate for the study. No activity means I am too far along in the disease for tracking or measuring results. I do not have any current lesions(new inflammation) just scarring. It is NOT that my brain isn’t working yet you can imagine the jokes I have had to put up with!
It will be tough watching from the sidelines however I have a lot of faith in mesenchymal stem cells as a viable treatment for MS and other diseases. These cells are derived from one’s own body or from human umbilical cords thus there is no need for anti -rejection drugs. From what I have learned these cells are restorative and regenerative. Albeit no one knows whether there will be any negative long term side effects. An upside is there is no need to risk depleting one’s immune system to begin treatment. I will be keeping my eyes open and my ears to the ground in regards to this trial. If this turns out to be “the ticket” everything must be done to move this forward as quickly as possible. Time is of the essence for me and many others like me.
Funding for the MS/mesenchymal stem cell research is coming from the MS Society. Dr. Freedman said there are only a few more hurdles to jump before the trial will get started; he is keen to get the ball rolling. Go Doc Go!