Almost four years ago, on Friday, March 6, 2015, I received the diagnosis MS.
How did it all start?
Around 2012, I realized that I kept stumbling while walking, even though I deliberately concentrated. For the first time in September 2014, I could not lift my feet off the floor while walking. As of January 2015, I noticed while walking that I lost control of my legs after about 4km.
I suspected a mechanical problem or a blocked nerve and went to an orthopedist.
The orthopedist referred me to the neurologist. When I had to paint circles with his feet in the air. In my opinion, I did it very well, but the neurologist noticed the control weakness and sent me to the radiologist for MRI. Before this date, I ran again a huge round of doggie, so yes, a possible inflammation as a cause would be visible. I almost got into the MRT afterwards. In the tube, I found it relatively relaxed despite the volume and even fell asleep for a moment. In between, I was injected contrast agent.
Then I was asked to talk to the neurologist. These minutes have burned into my brain as if they were about to happen again …
She talked and talked, showed me the MRI images, talked about scarring on the nervous tissue typical of MS. And that some of these scarring are acute sites of inflammation, they see in the areas that have taken up the contrast agent. This is typical in MS. MS, again and again this undefinable detail in their descriptions. Although MS was a term for me, I could not assign the word to my recordings. That’s why I eventually interrupted her with the question: “Aha, yes, well, but why MS?” She then said in a calm voice that she knew nothing else, giving a similar picture. Then I started to cry – although I still did not understand it and although I find it difficult to cry in front of strangers. Something in me had understood it before my mind, otherwise I would not have cried. And at the same time my mind was waiting for the moment when she said, “Oh no, that’s why you do not have to cry, I meant it differently!” But this moment did not come. Instead, she handed me a handkerchief and said, “I’m sorry.”
I am then through the waiting room from the practice and can still remember every single face of the waiting patient. Everyone was staring at me. Everyone knew it. That’s how I perceived it then.
I then stood in the street and did not remember where my car is. It took me four hours to remember.
This is a moment you can not imagine. I think everyone experiences such a moment differently. And then follow months and years, in which you get to know yourself completely new.
I first hammered on the door of my neurologist, who immediately referred me to the University of Mainz for diagnostics. This one week in the clinic felt like an adventure camp. I was in a room with three women, each with their own story, each one of their own drama – and we were all four awfully good-humored. Maybe that was partly due to the 5000mg cortisone that they pumped into my vein this week. We laughed and motivated each other and just did good. All sorts of tests were done, some were more than uncomfortable. The lumbar puncture, for example, or the power line tests – every day action.
The diagnosis was made and I was released with a handful of trial reports on various medications that described the efficacy in each study and the risks.
I came home and put my bag in the hall. There I was again. At home. And now?? Everything as before, still sick. Is incurable …. – and then I fell into an incredibly large, pitch-black bottomless hole.
It followed the great agony of the choice over the medication. 3 doctors, 5 opinions. What does the drug exactly in the body, how it works now in detail … no one knows. The immune system is somehow suppressed or modulated .. but how exactly now you do not know. It slightly reduces the rate of reload.
During this time, I regularly slept in and searched for a brown tablet that heals me. I opened drawers and rumgekramt until I was awake – initially quite perplexed. At some point, this sleepwalking was just part of my nightly routine. There is no brown tablet against MS, so I had to decide otherwise.
I finally decided on a drug. It came to me from the mechanism of action, at least what you know about it, as a social worker. I work as a social worker and I love my job – so this tablet felt like a colleague to me. That’s how I chose Tecfidera – but sleepwalked, I still continue to be regular.
There followed an absolute defiance phase. I did not want that diagnosis and I felt like a little kid who just needs to scream loud enough for the parents to finally understand that REALLY they do not want to! I really did not want this MS !! This was followed by desperation .. in the knowledge that I have to keep the MS but. And that nobody can do anything. So that means .. incurable.
Suddenly you realize again a whole new way of defining a problem. Or another dimming. That was really a hard time and I knew at some point, that does not lead anywhere. So I had to give up. And bend me. And somehow stay optimistic.
I then worked a lot on Buddhist topics, often visiting the Buddhist monastery, meditating and joining the Buddhist health center. There I took a medical history and then changed my diet. Lots of rice, no meat, special spices, etc. I went to the acupuncture twice a week, which was good for me. And I somehow tried to find some sense in the MS and bravely accept it. The whole thing was very expensive and the statutory health insurance does not support this. I then tried to open a supplementary insurance, but MS is consistently with all private health insurance an exclusion criterion. Thus, one had to stop my visits and the traditional Chinese treatment soon.
After browsing through special literature, I then radically changed my diet again. This time I lived exclusively ketogen for over a year with the goal of a special cell protection. That means no sugar, no carbohydrates, no alcohol. I live in the Rheingau and I tell you, that with the alcohol was really hard;) – But even without carbohydrates: no bread, no rice, no potatoes, no flour – not in sauces or soups. I lost a lot of weight and the diet was not good for me, so I stopped it.
This was followed by a depressive phase. I could only see walls and had no more wishes. That was a time when I had Antideprissva prescribed because I realized I was in the midst of a swamp. I needed a few attempts, but the medication was discontinued.
Then I learned about stem cell transplantation. That was at the beginning of the year 2018. I googled once again verbatim: “When is this bastard MS finally curable.” And there appeared an article from 2017 about the “potential breakthrough: MS first healed” – a miracle! Since then, I have intensively dealt with this therapy and made contact with various clinics in different countries. I want to be cured! At the same time, I have a lot of respect for this therapy, it certainly will not be a walk. And a not to be underestimated mortality rate is also present. … but: My walking distance is decreasing. I have spasticity, concentration problems, I am always tired. Where should that lead? What goals can I actually set realistically in my life? What can I wish for? Children? Slowly I start to isolate myself, because I just can not do many things anymore. I’m really a happy and joyful person, that often saves me the day. But in principle, I carry the threat at the neck, which robs me of energy. And the forecast just looks bad, the biggest optimism does not help. Stem cell! Now that this treatment has been approved for our neighbors in Switzerland due to high chances of success, I have made my decision: I would like to fight and face the MS! I had tried to befriend MS, but my MS is a radical beast that needs answer and limit accordingly. No optimism helps, because sharper guns have to be driven up: I want my life back! Or. my perspective. I want to dream again and look more calmly into the future. Stem cell transplantation is my chance for life!
In 2004, at the age of 22, I woke up in the morning and could not see clearly in my left eye. In the days that worsened until I could see the world just like a negative photo. At the same time, I no longer felt the surfaces of my legs and a tingling sensation in my fingertips. At that time I was in Africa; the doctors there suspected an unknown virus. The symptoms went away after a few weeks. What remained was the numbness in the fingertips, which the neurologists in Germany gave no meaning and I learned to ignore it.
From 2012 I stumbled increasingly. I attributed this to general fright and ignored it.
For the first time in September 2014, I could not lift my feet off the floor while walking. I was on my way to the post office. A friend was walking next to me and I said “hey, look, I can not lift my feet anymore … I can only shuffle .. like in slippers.” We were surprised. But it did not hurt and it soon settled again.
At the beginning of 2015, I regularly noticed a control problem in my legs during the walk, starting at a walking distance of about 4km. I first went to an orthopedic surgeon because I thought my pelvis might be crooked and block a nerve.
I was referred to the neurologist and radiologist. And got my diagnosis.
My scarred centers of inflammation are in the skull and especially in the area of the spine. There is plenty of room in the head. But the nerve cords in the spine are scarce. If something breaks here, the damage does not just go down like that. My lesions are really stupid. Especially the lesion in the cervical spine is bothering me. It is responsible for the fact that I have increasingly problems with the poor.I have heard again and again that I have to accept the MS. And that I have a mild MS with probably favorable course. I then actually accepted the MS. It was an intense and somehow highly complex inner process. But I succeeded. I accepted the MS as a part of me that might bring me to other experiences that may even enrich my life. Yes, maybe the MS enriches me somehow, I thought. I’m just an incorrigible optimist. Even then when I had to learn last year that my MS is not so easy and the course is rather unfavorable. I wanted to keep this course of optimism. Also due to a lack of options. If you know it’s going to be bad, but you do not see any way to prevent the worst, then you have to talk nice! MS, what a valuable experience in life. Change of perspective through the wheelchair. Life does not get worse, just different. These sentences helped me to accept the future.
Meanwhile, my MS runs without relapses, that is, nothing is formed back, but is constantly getting worse. The pace is so fast that I startle. From the outside you can not see it yet, but that will not be long. My walk is on good days 800 m, on bad days I go only 300m. My legs are always incredibly heavy, I have spasticity on both sides and I am often awakened at night. Incidentally, I no longer sleepwalk by the way. Maybe that’s because there are no medications left for me that are considered effective for this course.
Anyway, my left hand, but my right hand sometimes fails. I’m right-handed and sometimes I can not put my signature, because I can not lead the pen with the right hand, some of the right. I have Konzentrationspropleme, due to the so-called fatigue, a bleiernde tiredness, which I overpowered several times a day – which, by the way, does not see from the outside and help against sleep or caffeine. It’s a veritable curse to always be tired, so I just always mean!