From the onset of bad symptoms to my diagnose (2010-2014)
Here is a brief summary of what has happened to me in the recent years. I was 24 (2010) and I just finished my study as a laboratory technician. I got a great job at the university. My life was so far perfect. First own apartment, steady income and more time for sports and fun.
My symptoms began after an infiltration therapy of my cervical spine with cortisone and lidocaine. I thought I was going to die. I had the wildest symptoms that luckily never occurred again with such intensity. My left half of my face was numb, my left arm, my left foot it was all gone. I could not stand on my legs, could not see, I was dizzy, I was not able to breath, I had a bad burning in the cervical spine, I felt like I would listen through cotton, blurred visions and so on. I did not know what was happening to my body.
The emergency physician said that it was a panic attack. In the weeks after, I was in every specialist group that Germany has to offer. Neurologist, orthopedist, rheumatologist, cardiologist, neurosurgery, allergist, etc. All without any result.
Then, after 6 weeks, the respiratory disturbances were still there (though I did not have the typical nocturnal dropouts, I felt like my diaphragm is not working all day long) I decided it is time to go to a hospital.
They thought the MRI showed a dissection of both vertebral arteries and I was heparinized for one night. The next day the doctors decided that it was no dissection and I could go home. However, the symptoms were still there.
That went on like this for quite a while. Until I came across a forum on cranio-cervical instability. Then everything just seemed perfectly clear. Every symptom I had was listed there, and many more.
After half a year in which I was beginning to doubt my own psyche, I paid for a functional MRI and got a clear diagnosis. A rotational instability C1/C2, an angular instability C4-C8 and a stretched position of the cervical spine with various arthritis and disc protrusions. I thought it would be over now and everyone would believe me. But nothing happened. The functional MRI findings were not recognized by the neurosurgeon and dismissed as “too new” and “alternative” and the few who believed me could not help. So my journey went on.
I have seen physicians all across Germany without much success. A lot of static MRIs and x-rays were taken without clear results.
So I just tried every therapeutic thing I could find. Manual therapy, physical therapy, Vojta, massage, mandibular therapy , muscle building etc. For a while, my cervical spine thereby tightened so I was a little more functional again. But then I trained so hard that everything became worse.
Additionally my arms and legs became weak. And a I got a horrible instability in my ilio sacral joint, my hips, my knees and my shoulders that I could not explain.
A bad burning sensation across the back, over the right leg and bad nerve pain. By the time the burning was gone I was left with a feeling of breaking apart in the middle of my spine. I was not able to walk or stand for more than 5 minutes.
There was always more trouble with all authorities because I still had no “right” results. There was only a lot of speculation but nothing concrete.
After 3 years and 4 months I flew with my whole life savings to the USA to begin a prolotherapy there. It worked ok for my lower back and SI joint but I had no success at all in my cervical spine. But this made my therapist question why it did not work for me and why there were so many instabilities all over my body. He was the first who mentioned that there must be a underlying disease.
I was sent to a neurosurgeon in the USA. He diagnosed me finally (after 4 years of suffering) with a disease called Ehlers-Danlos Syndrome hypermobile type and multiple level instability of my cervical spine.
All my symptoms during childhood and teens were solved with this one diagnose. Prolotherapy improved my lower back stability far enough that I was able to walk a little bit again and finally my journey of finding the cause for all my problems was over. Now I knew what I had to fight for the rest of my life.
Update about what has happened since I got my EDS diagnose in 2014
Over the past years I have built a network of supporting specialists consisting of:
family physician, gynecologist, dentist, neurologist (outpatient), neurological clinic, cardiologist, orthopedist, sleep lab, pain therapist, angiologist, endocrinologist, mast cell specialist / hematologist, ophthalmologist.
What I am still missing is a neurosurgeon in Germany. For all other EDS issues I have finally and with very big effort found my specialists. Some of them with great EDS experience, others willing to learn.
Since my 2nd visit to the US, where I among other things visited a neurosurgeon and an experienced EDS-specialized geneticist and had a CT scan and an upright MRI of my cervical spine again, a lot of new things have happened. I got some helpful suggestions which diagnostic tests should be done in Germany.
With Ehlers-Danlos Syndrome it often comes to the development of one or more comorbidities and I had many signs for both, mast cell activation syndrome as well as dysautonomia.
Therefore I first went to see a specialist in a mast cell clinic and after an intensive consultation I was diagnosed with mast cell activation syndrome for which I am now taking antihistamins to avoid the nausea, gastrointestinal issues, cramping and chills after eating.
In case of the suspected dysautonomia I got a tilt table test and some other tests for the autonomous nerve system in a specialized neurological clinic which also knew a lot about EDS. The tilt test showed pretty clearly that I was suffering from autonomous dysregulation which is why I am now wearing compression tights to prevent from fainting, nausea, dizziness and all the other typical orthostatic intolerance symptoms.
As a secondary finding they found out that I am also suffering from small fiber neuropathy. This one I had not expected even though I have noticed a lot of numb patches on my feet and all over my body. Unfortunately I do not feel much down there anymore.
Also because of the suspected dysautonomia I had a sleep study. Dysautnomia patients often suffer from nocturnal tachycardia which disrupts the sleep and causes excessive daytime sleepiness. This is exactly what they diagnosed me with. It is called insomnia with frequent arousals for which I will have to take some medication to avoid tachycardia and hopefully influences my sleep in a positive way.
The endocrinologist has to take care of my thyroid disorder and check my cortisol levels every now and then.
Gynecologic, ophthalmic, dental and angiologic everything is fine so far. Cardiology still does only find a slight mitral valve regurgitation.
Meanwhile I have started pain management therapy. It was the right time for it because the pain is constant and increasing in intensity.
For all those appointments I again travelled throughout Germany because it is very difficult to find specialists for EDS close by. But the effort was really worth it and I have finally managed to build an almost complete network of physicians. The last year was attributed solely to improve my overall health and I had appointments every week, sometimes more than one. In addition there was physical therapy twice a week.
A long version of my story and my way to diagnose is now available for purchase (German language):