I am flying to Israel in two weeks to get HSCT (Hematopioetic stem cell transplant), which includes intensive chemo therapy, to halt the progression of my multiple sclerosis. I will be there for 6 weeks.
I was officially diagnosed in 2010 with PPMS, after two full years of tests.
Back when I was approaching 50 in 2006, I attributed anything strange with my health to peri menopause. I would fall for no reason, I had heart palpitations, and I had extreme sensitivity to heat.
I had bladder issues. I was told that I had a fallen pelvic floor, rectocele, cystocele. I had reconstructive surgery in 2008.
I had lower back pain and was told I needed fusion L5S1. Before jumping into another surgery, though, I wanted to explore further.
A chiropractor told me that my gait was off.
I went to a neurologist in 2009. There were white lesions on my brain. After a slew of tests I was told that I had MS. There is no definitive test for for MS, it is more about ruling out other diseases.
The first course of action was intense steroid infusion. No help.
Then, from 2010 to present I had a slow but steady descent. I went from no outward signs to needing canes, a rolling walker and a wheelchair depending on the distance.
I mark my descent by the years. One summer I could still ride my bicycle and the next I had to buy a tricycle due to balance issues.
Balance is one of my biggest issues. Some days the seas are choppy some days they are choppier.
It’s not actually possible to determine whether I have PPMS or SPMS. There is no specific test. I never had a “dramatic” episode where I had to be hospitalized. I can recall some minor incidents as early as 1983, which may or may not be attributed to MS, but again — it’s impossible to prove.
There aren’t any DMD (diease modifying drugs) for PPMS. Only ten percent of the MS population have primary progressive and all of the trials currently being done in the US are for Relapsing Remitting.I take Ampyra (the walking drug) and it really helps; I know if I miss a dose. I take Mirapex for Restless Leg Syndrome. I was taking Tecfideria, even though it is for RRMS. I stopped taking it recently because I don’t think it did anything for me, and I want to wash it out before HSCT. I also take 5000mg of Vitamin D, B12, probiotics, COQ10, and D-manose.
I have tried the Wahls Diet. You can Google her. She claims to have cured her MS through diet; it didn’t help me.
I have been to a functional doctor and a natural path doctor. No help.
I do physical therapy, yoga, water class, Feldenkrais, weight training — anything to stay fluid and mobile.
I discovered HSCT on the web, and it’s taken me a year to research and vet this procedure.
There are several closed Facebook groups I belong to: Hematopioetic Stem Cell Transplant, HSCT Israel, HSCT Russia, HSCT Mexico, and PPMS HSCT. I have learned so much from the file sections.
YouTube has many videos of people who have sucessfully halted the progression of their MS with HSCT.
A 60-minute segment by Morley Safer in 2012 on stem cell fraud at a Panama clinic made me very nervous. Stem cell treatment without chemo doesn’t work. I am still being contacted by the Stem Cell Institute; they are a fraud.
The treatment I am having is called BEAM and HSCT. BEAM is a myeloablative chemotherapy regimen that effectively wipes out the bone marrow and the immune system.
My expectations are as follows:
I hope to stop the progression of my MS. I hope to regain lost ability. I want to take long walks, I want to dance, I hope to walk my children down the aisle when they marry, and I want to help take care of any grandchildren I might have.
I do not want to spend my life in a wheelchair. I don’t want to lose my independence.
In the meantime, I’ve gotten a head start on short hair so it won’t be such a shock when I lose it due to the chemo…
***DISCLAIMER – Some parts of this blog are written by my family.***