MS: Busting the Myths
June 8, 2022 | Life with MS, My Story
Hello, my name is Luis and I’m from Portugal. I am a 51 year old, drummer and I have MS.
I’ve been active all my life on bikes, racing, gym, etc. On February 1, 2016, I woke up with a very strong pain in my left leg. I couldn’t walk or stand I didn’t know what was going on.
Two days later I was having my first MRI. After many doctors’ visits and appointments, on April 13, 2016, another brain MRI revealed many lesions.
I was too scared of not knowing what to do, the only way to make sense of everything was to start reading and researching everything I could about the disease. That’s when I came across HSCT which was a no brainer in terms of efficacy.
I talked to my neuro doctor he said I was fine and should start on Disease Modifying Therapies (DMT) soon.
I applied for the procedure and got a date in India in November 2017. I spoke to 5 haematologists here in Portugal and most of them said I was crazy. Only one offered me to help which I will be eternally grateful. Of course, my neuro doctor (who I like a lot) told me I was crazy, and it was pure suicide.
I talked to people in India who were having the procedure at the time, and they all said how well they were treated. I sent all my examination info to the haematologists in India and travelled there on Nov 10, 2017.
India (New Delhi) is a very fast paced city, there are lots of people running everywhere. The hospital was huge with many services, on the day we arrived we just slept. The next day I met the whole team, nurses, doctors etc.
I then had many blood pulmonary cardiac hearing tests, MRI etc and I was approved for transplant 5 days later. The following day, stem cells were collected and cryopreserved. And then 5 days of chemo where your bone marrow is wiped out.
You feel very weak and tired and in some cases you need to get blood components like platelets and red blood cells, luckily I didn’t need these.
After 5/6 days you get your own stem cells transplanted and start your recovery period. In this period you are given prophylactic antibiotics and viral medications, vitamins and blood pressure and temperature monitoring every 2 hours.
Then you wait for your blood numbers to rise. After about 2 weeks I had mine to good levels and went home Dec 9, 2017.
My first week at home was spent trying to catch up on sleep. For the next 1.5 months, I had weekly blood collection to check for infection and immune reconstitution.
After 2 months I started going to the gym https://www.youtube.com/watch?v=HnLXOvHQ7Ec and playing drums https://www.youtube.com/watch?v=UL_Rx-WPOMM
https://www.youtube.com/watch?v=D9BS7mM0tMc
March 2018, I participated in EBMT2018 in Lisbon where I met all the great experts in the field of HSCT for autoimmune diseases.
https://www.youtube.com/watch?v=jpEM6A5nCSw
After 1 year post-transplant, I still have physical strength: https://www.youtube.com/watch?v=umPntO448mo
After 2 years https://www.youtube.com/watch?v=5-qVefo5kKY
After 3 years https://www.youtube.com/watch?v=I3wUJYl64gc&t=60s
After 4 years https://www.youtube.com/watch?v=z0fJBGgXCc8
Last November – Last MRI said I’m stable. I’ve never had any medicine for MS.
In conclusion:
I would like to say that the first HSCT for MS was made in 1991 and the first drug to gain approval for MS was interferon beta in 1993. HSCT has greater than 80% efficacy for long-term remission of MS Interferon 8%. Additionally, 2019 DMT costs in the US ranged from $80,000 to $100,000 per year per patient. HSCT (Chicago) $85,184 median and still HSCT is not approved for MS.
Reference:
https://pubmed.ncbi.nlm.nih.gov/32731201/
The story above was provided by Luis and has been written in his own words. The thoughts expressed are his alone, not those of MSNZ.