Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.
Sorry for the delay since the last post. It's not because nothing has been happing, rather, it's because so much has been going on.
First off, I had my last chemo treatment the week before last. Yay! That was number five of the post-treatment rituximab infusions as recommended by Dr. Ruiz.
Next, I did start a course of professional neuro-stimulatoin, employing both tDCS and pEMF. This is part of my "everything against the wall" technique. I've been using Dr. Tiff Thompson at Theramind in Santa Barbara. This company has several offices in the USA. After about three weeks of treatment, I'd estimate my average daily pain has been reduced to about a third of what it was prior. Likewise, I've also been able to begin my decrease of daily medication (so far, 1100 mg/day tegretol before treatment, down to 800 mg/day as of today).Add a comment
(or, Searching for SIMs)
I just watched a fabulous presentation, Treating Pain Using the Brain by David Butler, to whom you may remember me referring in a previous post about pain. Both he and his professional partner, Lorimer Moseley, are brilliant lecturers and mavens about how the body "creates" pain. I spoke previously about their book, Explain Pain. This lecture contains some new, useful information for me.
DIM and SIM stand for Danger In Me and Safety In Me, respectively. Watch the video to see how they work along with the magic medicine cabinet in the brain. Fascinating.
If you speak American English, you might find this presentation slightly difficult to follow as Butler is Australian, and he speaks in a strong vernacular. Furthermore, the presentation is aimed at medical professionals, so there is some lingo and medical references. (At this point in my life, I feel like I have an honorary degree in medicine after all I've been through.) Anyway, I feel like I learned a great deal, so I want to share it with you:Add a comment
As they have been throughout the last couple of years, things are remain complicated.
Since my last post, I've had a friend whose ongoing pain issues may become an MS diagnosis. And there's two dear family members with serious cancer diagnosis. After some deep soul searching, I've been able to consider my own illness with a bit more perspective. I have to learn to be more humble about my own problems.
My leading, ongoing issue is still pain. According to Dr. Ruiz, the window of opportunity for the maximum amount of healing (or symptom reversal) after HSCT for MS, is months 9-12. Today, I'm at month +9.2, which puts me squarely into month 10, about halfway through this window. I fear it will pass me by while I'm stuck on the couch minimizing my pain.Add a comment
Today is my eighth month anniversary of getting my stem cells back. Boy, as slow as things seem to move, time also flies.
I've been doing photography for the Arlington Theatre during 2017 Santa Barbara International Film Festival, and on Wednesday, I saw the opening night film, “Charged." This was quite the human-triumph-over-adversity documentary film and a kick in the pants for me to get over dwelling on my own problems. This is the story of Edwardo Garcia, who got shocked nearly to death with 2400 volts, who spent months in an ICU, only to discover he also had testicular cancer. Through extreme surgeries, chemotherapy and years of physical therapy, he managed to pull through, albeit now with a prosthetic arm.
Standing right in front of me on the red carpet, I saw this handsome, young man smiling from ear-to-ear. He was fit, happy and forward-looking. How did Garcia do it? The man is an inspiration. The bottom line: never give up!Add a comment
I just noticed that on my most recent physical therapy script from my pain neurologist, there's a note to my trainer: "MS in remission!" Yes, he used an exclamation point. It's been 10 months since my last MRIs and 10 months since my last dose of any MS meds. The MRI report came back, "no change."
I further challenged these new results; I went into a hot jacuzzi for 45 minutes, something I wouldn't dare try while in my previous throws of MS symptom hell. There was no effect other than the nice relaxation you'd expect from a comforting soak. This is double proof that my MS is gone!Add a comment