Is the Process to the Diagnosis an Odyssey?

I've been experiencing neurological symptoms since last year. One of those is actually visible: seizures. I tried to not think about them but after a few months my friends & family started to worry about me. In spring I visited my neurologist and had my first MRI in order to look for an epileptogenic focus. At the appointment the assistant asked me whether I've got a tumour in my brain (because of the contrast medium, of course). This was the first moment I got afraid of a severe disease but I wanted to keep calm though, so I gave my best to relax inside of the noisy device.

Left with no diagnosis and a lot of questions

Some days after that my doctor called to tell me that the images show a lesion in my brain - "an untypical pathological change according to my age". After that I was at a hospital for MS patients and the doctors did a lot of other tests as well as an MRI of the spine to get a possible diagnosis. After three to four days I left without a diagnosis and arrived at home with a lot of questions... What was wrong with me? What if all of this was only in my head? What if I was crazy? The worst thing about it was that I had nobody to talk to. My social environment and even my parents doubted that I had a severe illness... Although there was evidence for pathological processes in my body and qualified health personal considered the typical investigations necessary. I never felt so alone.

The uncertainty is nearly unbearable

In autumn I saw my neurologist again and got support. She told me to not ever believe that I make up the symptoms and that my perceptions or sensations were real. It was a great relief for me to finally be understood. I found the warrior within me again. Yesterday I had troubles with my legs but I did not give up. I made it to go down a lot of stairs which I was not able to detect. It was a big surprise for me that this was possible despite of the problem. In my eyes it was like a little victory. Tomorrow I've got the next MRI. It sounds strange but I somehow hope for the diagnosis MS or any other because the uncertainty is nearly unbearable.

I hope that this post somehow helps people who are or were at this stage as well and can relate. Please, feel free to share your experiences and advice with me!


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