From the onset of bad symptoms to my diagnosis (2010-2014)
When I was 24 years old (2010) and I just finished my education as a laboratory technician, I was offered a great job at the university and my life seemed to be perfect. I moved into my first own apartment, had a steady income and enough time for sports and fun activities – until everything changed…
My symptoms began after injections through my cervical spine. Cortisone and lidocaine was used to infiltrate my facet joints along my cervical spine, and after the doctor was done, I thought I was going to die. I had the weirdest symptoms: my face became numb; my left arm and foot – all gone. I could not stand on my legs, nor see clearly; everything was blurry, and I was dizzy. Additionally, I was not able to take a breath and my cervical spine started to burn. I was scared like never before and had no idea what just happened to my body.
When I called the on-call physician, he said that I suffered a panic attack. Still, over the next weeks, doctors felt the necessity to sent me to basically all specialist groups that Germany had to offer – neurologist, orthopedist, rheumatologist, cardiologist, neurosurgery, allergist, etc. All without any results.
Since my respiratory disturbances were still ongoing, I decided – after six weeks – it was time to go to a hospital. A MRI was done and some doctors believed it showed a dissection of both vertebral arteries, so they gave me Heparin via infusion for one night. On the following day, they decided that there was no dissection and I could go home. However, my symptoms were still there…
It continued like this for quite a while until I came across a website about something called cranio-cervical instability (CCI). Suddenly, everything just seemed perfectly clear; every symptom I experienced was listed there, and many more.
After six months, in which I began to doubt myself, I decided to pay out-of-pocket for an Upright MRI, which was the only clear diagnostic measure to find out whether I was suffering from CCI or not. It clearly showed a rotational instability between C1/C2, an angular instability between C4-C7 and a loss of cervical curvature with arthritis and disc protrusions. I thought my search would be over now and everyone would believe me, but nothing happened. My Upright MRI results were dismissed by all neurosurgeon and called “too new” and “experimental”, and the few physicians 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 done without clear results.
As a consequence, I just tried every therapy I could find – manual therapy, physical therapy, Vojta, massage, TMJ therapy, and many more. For a while, my spinal muscles went into severe spasm which made it a little more stable, and therefore I was more functional again. But then I overdid it and exercised so hard that everything became much worse.
Now, on top of my cervical spine, my arms and legs became weak, and a I acquired a pretty severe instability in my ilio sacral joint, hips, knees and shoulders that I could not explain.
A burning sensation all over my lower back and into my right leg occurred. At some point the burning stopped, but 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.
Besides my chronic illness, many other problems arose. Since I still had no adequate results, many German authorities refused to support my needs.
After 4 years I wanted to give up. I had done enough research and just could not stand one more disappointment. There was only one more option I had left: I flew to the USA to try prolotherapy, an alternative treatment to stabilize my ligaments all over my back. It somewhat worked in my lower back and SI joint, but I could not feel any improvement in my cervical spine. My strange response made my therapist question why prolotherapy 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 an underlying cause.
To find out more, I was sent to a neurosurgeon in Maryland. Finally, he was able to solve the puzzle and diagnosed me with Ehlers-Danlos syndrome hypermobile type and instabilities of my cervical spine. All my symptoms starting in childhood were solved with this one diagnosis!
Prolotherapy improved my lower back stability to the point that I was able to walk a little farther again, and finally my journey to diagnosis was over. Now I knew what I was fighting against for the rest of my life.
What happened since I got my EDS diagnosis in 2014?
Over the past years, I built a network of supporting specialists, consisting of:
primary care 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 plus an Upright MRI of my cervical spine again, a lot of new things have happened. I was told, I might have other comorbid conditions of EDS, and diagnostic tests were suggested.
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 was examined via tilt table test and some other autonomous nerve system test in a specialized neurological clinic, which also knew a lot about EDS. The tilt table test showed clearly that I was suffering from autonomous dysregulation, which is why I am now wearing compression tights to prevent fainting, nausea, dizziness and all the other typical orthostatic intolerance symptoms.
Additionally, they found out that I was also suffering from small fiber neuropathy. This one was unexpected, even though I noticed numb patches on my feet and all over my body.
Because of the dysautonomia, I had a sleep study done. Dysautnomia patients often suffer from nocturnal tachycardia which disrupts the normal sleep pattern and causes excessive daytime sleepiness. This is exactly what they diagnosed me with: insomnia with frequent arousals, for which I will have to take beta blockers. They are supposed to prevent nocturnal tachycardia, and will hopefully influence my sleep in a positive way.
The endocrinologist had to take care of my thyroid disease 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 a pain management therapy. It was the right time for it, because the pain is constant and increasing in intensity.
For all those appointments I travelled all across 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):