The possible remitting effect after HSCT is supposed to kick in between 12-18 months post transplant. So now, it is all up to me to be better. I have had measurable effect, now it is mostly just my argumentative right leg that is – litterally – dragging behing.
Balance and excercise
I have been a bit worried that my balance has become slightly worse than before. Then, at our Christmas-party, I was discussing this with both my daughters in law. They are both black-belts, and due to pregnance and university studies, none of them has been practising taekwon-do the last year. And they both have noticed worse balance! So maybe not every problem is a MS-problem 🙂 I had 13 years of martial art-practicing before Karolinska, and now I have 2 years of…nothing…..
I am experiencing greater variance between better and worse now, than I did pre-HSCT. In the morning, I can feel stiff, spastic and walking with terrible balance, but when I get out of the hose – to work, travel, fix things – I walk on high heels straight and confident, giving speeches, lecturing for 8 hours in a row, better than I have been for several years. When I left for Karolinska, I was problably EDSS 3.0 – 3.5, now I feel the interval is between 2.0 to almost 4.0. I am fully ambulatory all the time, but must admit that sometimes i love the “romantic walker!” aka holding hands 🙂
A month ago, I attended a seminar about MS-research. Most of the recognized norwegian neurologist and researcher were present, and after talking to many of them in the breaks, I am happy to notice that they know more about HSCT and seem more positive now than 2 years ago. I also talked to one of them, who is claiming that HSCT is just another DMD, and that I must expect to get my MS back later. I strongly disagree, and cant find any empirical infomation supporting his argument.
Later that day, I was happy to listen to JoKim Burmann from Uppsala in Sweden, who has treated bround 20 MS’ers with HSCT. They opened for questions from the audience, so I presented myself, told them that I did HSCT 18 months ago, and that I refer to myself as “having had MS”. I told him about my disagreement with the neurologist claiming HSCT to be DMD, and asked him: Do you think it is just slowing down the disease? His answer was loud and clear; “No!”. I was so happy about that answer in front of that specific audience 🙂