Hsct-ms treatment
FAQs
What is Multiple Sclerosis
Multiple Sclerosis is an autoimmune disease in which the body attacks nerve fibers and myelin sheathing (nerve insulator) in the brain and spinal cord. It tends to affect people in different ways in varying degrees of frequency. My Neurologist explained that it's like when you have an electrical cord and the protective coating gets cut away, exposing the wires, which allows them to fray, short circuit, and misfire. As a result, lesions, aka scars, can happen in the brain or anywhere along the spinal cord.
What is the cause of Multiple Sclerosis
The cause of Multiple Sclerosis is unknown. It is unclear why MS develops in some people and not others. A combination of genetics and environmental factors appears to be responsible, and you're at increased risk of developing it when you have a family member with it. There are also specific risks for developing multiple Sclerosis such as age (20-40 yrs old), women are two to three times more likely to have RRMS than men, family history, certain infections, low vitamin D, etc.
What are the symptoms of Multiple Sclerosis
Numbness and tingling, fatigue, walking difficulties, spasticity, MS hug, vision problems, weakness, dizziness, pain and itching, bladder and bowel problems, emotional changes, cognitive changes, depression, tremor, seizure, problems swallowing, hearing loss, breathing issues, speech, and loss of taste.
What Treatments are currently available
There are many disease-modifying drug options in varying types of administration (oral, injection, infusion). HSCT is also available in some countries. In addition, some people choose a more holistic approach with diet, exercise, getting plenty of rest, limiting stress, acupuncture, and supplements.
what is HSCT
That is an excellent question with a complex answer. First, it reboots your immune system, so your body no longer attacks itself. The process includes shots to mobilize stem cells from bone marrow, apheresis to harvest the stem cells, conditioning with chemo to destroy the former immune system, and infusion to speed up recovery. I have included a link with more detail, hopefully addressing any questions you might have.
what is the goal of HSCT
HSCT aims to halt disease activity affecting inflammation preventing relapses and new lesions.
Did you try any disease-modifying drugs, and were they helpful
Personally, the only medications I tried were Copaxone, LDN, and Prednisone. I realize there are many more options, but I was honestly scared of the possible side effects. I went from barely taking a Tylenol to injecting myself with something that had undesirable side effects. I wanted a more permanent solution. Copaxone was easy enough to handle and became routine but caused depression and 80lb weight gain, often making me feel worse than the actual MS itself. LDN was beneficial short term but lost effectiveness. Prednisone is excellent at lowering inflammation, shortening the length of time for flares, and giving energy, but it can be dangerous long-term and not a permanent solution.
If you had to do it all over again, would you
Yes, 100%
What would you say to someone considering this option
Hematopoietic Stem Cell Transplant (HSCT) is not what I would classify as an easy, risk-free path. Everything involved in the treatment has been around for a while and approved for forms of cancer; however, this is not FDA approved for the treatment of Multiple Sclerosis and is an investment since insurance won't cover it. Weigh your pros and cons, then go for it if it feels right for you.
Perks of having treatment in Puebla, Mexico
I received the absolute best medical care I have ever received, and I'd say possibly the best place in the world. The pros were having a nurse available to stay with me allowing my husband and kids to stay home. I had a large, warm, comfortable apartment rather than a tiny, cold, stark hospital room, making it comfortable, relaxing, and less clinical. All of the nurses were gentle with shots and labs. The staff was incredibly knowledgeable. They had everything available on site, so we didn't have to go far for treatments except having our port put in at the hospital, done at Labor and Delivery, extremely clean with huge rooms. We had laundry service and thoroughly cleaned rooms daily. They went above and beyond with COVID protocol to keep us safe. They communicated and kept a close watch on all their patients. They had delicious food, which I typically took as room service, and a beautiful rooftop for fresh air and sunshine, plus the weather was near perfect every day. I also appreciated the follow-up care, so it wasn't a one-and-done, and I always received quick responses to anything that should arise.
While I can't say my Neurologist supported me going to what he considered extreme, he did agree to keep treating me once I returned. In addition, my hematologist in Nashville monitored me for recommended checkups, commended my bravery, and was impressed with the level of care provided, saying the treatment would've been administered the same had she done it herself.
Helpful suggestions
First, contact the doctors with a scheduled time to meet once you return home. Some doctors in the United States would not treat you if you received medical treatment outside the country, so be mindful of that when scheduling. I was told I could go in through the ER if I had trouble finding someone, but I found a Hematologist in Nashville, TN, and continued with my Neurologist in Birmingham, AL.
I honestly wasn't sure what to pack and brought way too much. I wasn't sure how often laundry would be done, so you only need about a week's worth of clothes. Alex did optional grocery runs weekly, so you don't need to pack food. You give him your list and cash, then he takes care of the rest and delivers everything to your room. They also provide snacks in the room free of charge. I felt like things were much easier having a nurse live with me. She prepared my mind and guided me through treatment, putting me at ease. She was also excellent company and took care of everything. Christian felt like family, so I adore her and cannot say enough good things. The clinic provided all the necessary safety items like masks, face shields, gloves, toiletries, and assistive aids (wheelchair, shower chair), which I needed during chemo. I also strongly recommend getting your post-treatment medications before leaving. You have the option to purchase the entire six-month supply, and it was a little less than mine would've been with insurance in the US, so you may want to plan for this out-of-pocket expense that was well worth it, in my opinion.