MY STORY – Karolinska 2012
How I was approved for treatment
In 2011 I read about HSCT in the norwegian MS-magazine, and decided to apply.
All the international univeristy clinics needed to get a «Treatment indication» , a referral from an public neurologist.
But there was impossible to get that referral
They would say that it was too dangerous, too expensive, that I would not benefit from it.
I was stuck. But then, I got the suggestion in the international forum (at that time, we were 5 memebers….) to ask international clinics if I could pay for a consultations, without them being committed to admit me.
In february/march 2012 I was in Heidelberg in Germany and at Karolinska in Sweden. I paid about 25K NOK /about 3K dollar, to get a medical evaluation: Was my MS of a kind that would beneefit from HSCT? Would they accept me as a patient?
I got hte most thorough neurological assessment ever, both places conducted from professorswho specialized in MS. I was defined as Relapsing Remitting, and got acceptet both places. My husband and I decided on Karolinka, primarily because of travel distance and similar language. JI started treatment in april, and got my stem cells back May 24th 2012.
The treatment
The precise name of the treatment I did is «Autologous Hematopoietic Stem Cell Transplant, myeloablativ BEAM Protocol». In 2012, that was an ordinary protocol, with high dose chemo – actually deadly if I did not get my stem cells back. Myeloablativ means that they erase all the blod cells, so they can re-build with the stem cells. Noen-myeloablative is not so invasive, that is why the non-myo protocol is called «Stem cell suported» protocol.
Non-myo is more common now, since they have developed this treatment to be more efficient, and not so tough on the body. But it is still autologous HSCT, bacuase you still use your own stem cells, not a donor.
I have after I whil accepted that people refer to this as «stem cell treatment», even though the correct name is «stem cell transplant». Back in the days we needed to differentiate, because there was a lot of «clinics» offering stem cell by post. Jsut scam! Luckily, as HSCT get to be more known, people are less likely to believi in the scammers. As we say, no chemo – no cure.
I had two policlinical stays, in Åpril for afarese (harvesting my stem cells) and then in May for initial chemo (to avoid flare ups while waiting). Then I was admitted as a private paying patient from May 13th to June 5th. Six days of high dose chemo, one day pause, and then my stem cells back May 24th to rebuild my immune system. You need to be isolated, because of the risk of infections. During the isolation, you are awaiting the blood count to be measurable, indicating a functional (if week) immune system.
In Media
The norwegian national broadcaster (NRK) was following me all the way.
They have a health program, called NRK Puls, and they dedicated almost all of this to my story. They interviewed me before, during and after treatment. On the picture above, you se the journalist Anders Leines from NRK interviewing Prof. Hans Hägglund about the treatment.
March 11. 2013 I was in studio, being interviewed about the initial result of the treatment
I always find it interesting to see the program again, and the things I said in 2013 still apply. I was a reluctant optimist. f couse, I did not get the results I were hoping for – but that is another story. I was hopefull and a bit reluctant to use too big words that early.
I never said «I am healthy now», because I did not want to be queoted on that. But I knew the importance of doing the right inner dialogue, but in my mind I was using the term «healthy».
And I was all the time correct about the main purpose of HSCT: To rebuild an immune systeme that is without the autoimmune «bug» that makes it attack its own body. I do have a new immune system, so called 2.0 version, and it has not attacked me since.
THE TREATMENT WAS A SUCCESS – BUT I AM WORSE
HOW IS THAT POSSIBLE?
UNDERSTANDING MS
I have for many years used a quite simple explanation on what MS is. I use it for both children and adulst who believe that MS is a muscle disease. It is not, it is a disease in the central nervous system (CNS).
I you compare your body with a house, then the neural system is the electrical cords all through the house, making your appliances work. Multippel Sclerosis is the mices chewing on the white insulation around the cords (AKA myelin, right?). When the electrical cords are exposed, there will be a shortcut and chaos in you fuse box. (AKA your CNS)
Using this metaphor on HSCT, you see that HSCT is the extinction of the damaging mice, and there is no new chewing on the cords. But you still need an electrician to fix the damages, right? HSCT does not do the fixing, all remitting is up to your bodys capasity to heal old damages.
SO HOW CAN «GETTING STEM CELLS» MAKE YOU BETTER?
When you are young, your body is quite capable of healing it self fast. Just see how a 3 years old with a bruise is healed in days, compared to a 80 year old – who will probably be black, blue and yellow for weeks. When an inflammation passes, your body will start re-myelinisation to fix the damage.
When you get older, your body’s ability to heal completely will be reduced. It will be slower and not so effective. This is actually what newer research is suggesting – that progressive MS is a consequence of earlier relapses and damages to myelin, that with age is getting more fail and gives you reduced functionality. My professor at Karolinska, Prof Fredrik Piehl is researching this.
When you body eventually is not able to fix the old damages, you will transition into progressive MS.
There is no cure, no treatment, no modifying drug, you will just slowly and steady get worse. This is my situation now.
But since no one has the full understanding of the brain and the neural system, I have decided to belive that it is possible to influence this deveopment. Engaging the brain. Being concsious of what I eat. Doing mental training. Doing physcal exercise. And I believe that it is working.