- In 2004, the first symptom of MS was retrospective: visual disturbances of the left eye, numbness of the legs and fingertips. Everything developed back to the tingling in the fingertips.
- 2012 increased tripping and kinking
- 2014 at times the feet stuck to the ground “sticking”
- 2015 diagnosis MS, relapsing course (RRMS) – EDSS of 2.0: my walking distance was 6 km.
- 2017 Suspected SPMS. Walking distance about 1.5km.
- 2018 gradual course (SPMS) – EDSS of 3.5-4.0: my walking distance was at the end of the year at a maximum of 800m.
- 2019 My walk was at the beginning of the year at 200m.#
- 06.March 2019: my stem cell birthday
- March 19, 2019: I will be released MS-free from the Pirogov Clinic
How did it all start?
Around 2012, I discovered 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, while walking I noticed 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 in the MRI. Before this date, I ran again a huge round of doggy so that even 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 with the radiologist. 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. MS was a term for me, but 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 on 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 each other 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 of their own drama – and we were all four in a good mood. 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 reduces the reload rate slightly.
During this time, I regularly sleepwalked 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 in the approach, 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 parents to finally understand that REALLY they do not want to! I really did not want this MS !! After that despair followed .. in the realization that I have to keep the MS but. And that nobody can do something. 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 made 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, MS is but with all private health insurance policies 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 more than 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. It 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 again verbatim: “When is this bastard MS finally curable.” And there appeared an article from 2017 about the “potential breakthrough: MS first cured” – a miracle! Since then, I have dealt extensively with this therapy and have made contact with various clinics in different countries. I wanted to be cured! At the same time, I also had a great deal of respect for this therapy, a walk would certainly not … My walking distance was increasingly reduced. I had spasticity, concentration problems, was always tired. Where should that lead? What goals could I actually set realistically in my life? What could I wish for? Children? Slowly I started to isolate myself because I just could not do many things anymore. I’m really a happy and joyful person, that saved me the day often. But basically, I carried the threat on my neck, which robbed me of energy. And the prognosis just looked bad, as the greatest optimism helped nothing – even if the doctors continued to speak of a mild MS. Stem cell! After this treatment was also approved for our neighbors in Switzerland due to high chances of success, I had made my decision: I wanted to fight and to face the MS! I had tried to make friends with the MS, but my MS was a beast that needed the answer and the limit. No optimism helped, because sharper guns had to be driven up: I want my life back! Or. my perspective. I wanted to dream again and look more calmly into the future. The stem cell transplant was and is my chance for life!
course
In 2004, at the age of 22, I woke up in the morning and could not see clearly on my left eye. In the days that worsened until I could see the world as if through a negative photo. At the same time, I no longer felt the surfaces of my legs and a tingle 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, to which the neurologists in Germany gave no meaning and I learned to ignore it.
From 2012 I stumbled increasingly. I attributed this to general felony 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 a 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. She is responsible for the fact that I increasingly have 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 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.
At some point, my MS was without relapses, that is, nothing formed back, but it was constantly worse. The pace was way too fast. From the outside it hardly looked like me, but that would not have taken much longer. My walk was on good days 800 m, on bad days, which remained at the end, I went only a maximum of 300m. My legs have always been so incredibly heavy.
Anyway, my left hand, but sometimes my right hand also fell off. I am right-handed and sometimes I could not put my signature, because I could not lead the pen partially with the right hand in part.