HSCT – my miracle!

21.10.2019

Hello my dears,

It has been a long time since I wrote my last post.

I had told you that I’m fine and I really want to be MS-free now – and thus like to leave the subject behind me. What should I say – easier said than done. The diagnosis and the whole process was a trauma. Being told that I’m suffering from an incurable disease is one thing. But all the examinations, the stay in the Mainz University Hospital, the whole procedure of taking anamnesis and diagnosis to get over, then to come back home, but still continue to take the disease – this is an experience that is probably not for outsiders understandable. What “incurable” actually means and how that feels can not be explained to anyone. Many then say, “Oh, that will work!” – No, it just will not, because it is incurable. “I have to go through it now!” – No, that’s not a tunnel, that’s a dead end.

And I remember very well how I sometimes lay on the floor in my apartment – howling! And absolutely desperate. Bucky like a little kid. And unable to accept my future forecast. I cursed God, then begged him again, challenged him – all at once.

And suddenly the miracle: there is a way out! It is not hopeless! It is to be stopped! And in the German Society of Neurology, even a press release has appeared using the word healing.
It’s a miracle! I did the miracle. That’s how it feels. And you helped me !! You laid it at my feet!

I am MS-free now. And I feel that too! My balance has improved and my training is not a bottomless pit, it is actually fruitful. That’s so great !!

– Nevertheless, it was not completely uncomplicated:
a few weeks ago, my blood levels suddenly dropped radically. I still go to the blood control weekly. One week everything was okay. And the following week, my leukocytes fell below 1000! Normal are about 4000-10,000 leukocytes and of which has about 60% neutrophils granulocytes (the immune system). And in my already too few leucocytes I had just 1% neutrophils! These values ​​I had during the isolation in Moscow. – So, what happened? The doctors here were at a loss … I then also contracted an infection and had to go to the hospital. There they were just as perplexed. So I got in touch with Dr. Fedorenko. He was not at a loss and explained that this was a side effect of rituximab that I had received after chemotherapy. This effect is described in the literature as LON. Unfortunately, the German doctors are very proud and did not really believe this explanation. I’m used to these windmill wheels by now … In the university hospital they would have liked to have a bone marrow puncture or, if they are already there, a bone marrow biopsy. The meaning behind it was not quite so clear to me, that’s why I refused. The resident medical assistant explained  – that I quote, “This way we can see if your stem cells have changed their shape, for example.” – Hm okay …. I was not in Fukushima!
Dr. Fedorenko said that I should not worry. The values ​​will self-regulate.
After being accidentally over-stimulated (I received too high a dose of Neulasta), I was discharged with 64,000 leukocytes and 83% neutrophils. As a reminder: Normal is 4000-10,000, I had 64,000 and severe bone pain because my bone marrow exploded.
Only a week later, the values ​​fell again, again to 1000. Dr. Fedorenko advised to stimulate again (this time, please duly dosed). But my hematologist told me frankly that that was just too expensive for her. Her budget does not allow that. If necessary, I have to go back to the hospital. Open and honest she is. Basically, I was happy, because I wanted to let my body manage it myself, even if it takes more time. So I put on the mask again. And lo and behold: it regulated.
Really bad, this side effect is not. You just have to react accordingly and have patience.

Meanwhile, I train a bit again – although my time-out really threw me back. That’s a bit frustrating, especially when you’re as impatient as I am. But it was predictable, because all the patients in front of me told me: in the first 12 months you are in the “Rollercoaster”, it goes up and down.

But all that does not change my happiness. I am happy! I do not think anymore: what will be tomorrow? I think tomorrow will be better! And I do not hope so, I know and I feel and I observe that it is true. My walk gets better and better. During the infection, my nerve conduction velocity dropped and I had to go to the hospital by wheelchair – these are the damages of the MS. But once the infection was out, I could walk again. And after everything stabilizes again, my successes come back again.

Dr. Fedorenko has given me examples: He still has contact with one of his first patients, whom he treated 19 years ago. She is MS-free until today! She was sitting in a wheelchair then, today she is walking on high heels. A similar success story has a patient who now lives in Germany – he has made the contact between us.

Many of you may have seen my post on Facebook. I will insert it again here. I find it incomprehensible how people are let down with their diagnosis. At the beginning of this post, I told you that it is not easy to shelve the subject of MS. Every fiber of my soul remembers this trauma. And I process it by continuing to fight – for others. This is how I process my nightmare. I want justice and I want the MS patients to get the same opportunity I got: get out of the dead end! And it makes me angry, with what ignorance the doctors proceed. And how they justify – for themselves and for others. That’s why I wrote this post:

HSCT against MS – my statement to the neurologists!

Again and again, I receive requests from MS patients who ask questions and want to know more about my experiences in Moscow.
At the same time, I get to hear that some neurologists (including mine!) are almost losing their composure and reacting very grumpy to the interest of their own patients in this treatment. Thus, some patients have to listen to the opinion of neurologists that “Moscow only wants our money”, it is spoken of “rip off”. One should rather go to Hamburg to Dr. Heesen, who has just run a study with HSCT in Hamburg.

At this point it is my urgent need to clarify the following:

Dear neurologist,

First, we will not let the money out of our pocket for fun! We are fighting for our lives – necessarily self-reliant, while you continue to prescribe drugs that are both high-risk and clearly (clearly!) ineffective. I do not have to argue here, you know the study data yourself!