05/16/2023
I celebrated 2 years post HSCT two months ago. Friday, I had a very cathartic consult for the very last time with my MS neurologist near Austin, Texas. I had been treating with him for 12 years. He had been highly recommended by my MS researcher-neurologist in Detroit.
Anyway, he was leaving the practice of clinical work/seeing patients. And on THIS day he rather quickly summarized my whole MS "resume" noting all six disease modifying drugs I had been on and the major exacerbations I had had since 2012. It was like a scene out of a movie, really.
We discussed how well I was doing and how I would finally be able to have the neuro micro surgery for my two very herniated lumbar disks. You see, I am 60 now and have seriously fallen many MANY times from the MS. But that was not the focus of Friday's visit.
My doctor went on to say I a had always been a forerunner in my own treatment as evidenced by the choices I made to be well. He spoke very encouragingly about my March 2021 HSCT. He was so glad that I was awaiting my first consult with a University of Texas neurologist professor, stating that UT would likely learn from me and my HSCT experience.
Now there are MS patients post HSCT who never continue needing a neurologist. That is FANTASTIC! For me, my body gradually became disabled by the 21+ years of MS. The HSCT has STOPPED progression of the MS as evidenced by the two MRIs I had last year. Yet, I still have the lingering consequences of having had MS all those years. Nerve damage primarily. My MS has caused me to still take epileptic medications for the very very mild trigeminal neuralgia I still have. It once was horrendous, and the HSCT treatment has mostly eliminated the MS activity allowing it to barely affect the nerve in my brain. Remember, trigeminal neuralgia is often called "the su***de disease." I take the epileptic medications to perpetuate my succesful management of this condition. That is mainly why I want to be followed by a neurologist.
In sum, I am doing very well! My definition of success for HSCT was that my MS would stop its progession and not get worse. Check. :-)
I remain grateful for the emotional and financial support during my HSCT journey from all of you that gave it. You will always remain a blessing in my life...
I realize this was a long post, but I have always wanted to be transparent about my HSCT journey for those of you considering doing it. Those of us understaking it are truly medical pioneers on the forefront of changing the course of MS treatment. I applaud you all and will forever be indebted to Clìnca Ruiz in Puebla, Mexico. ♡
Here is a Mother's Day picture of my newlywed son and daughter-in-law, me and my beloved husband at a little cafe. Salute
