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!
Love,
Sophy
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