ef26433's interview
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How did all start?
In 2013 I had strange symptoms that at the time was discribed as psychosomatic. Auto-honey, oscillopsia, hearing my heart beat, hearing my bones crackle, disequilibrium, hearing my eyes move, tinnitus, etc... It got worse and worse and had to take a lot of sick leaves.
Do you already have a diagnosis? How long did it take you to get it?
Yes, bilaterally SSCD. It was diagnosed in May 2018. So I was send from doctor to doctor for 5 years until I had my diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Psychiatry, endocrinologist, nose throat ear specialist. The last one was the most useful
What has been the most useful thing for you so far?
My two surgeries. I have lost most of the debilitating symptoms
What have been your biggest difficulties?
Having acknowledgement of my situation. I lost a lot of social contacts because I had to miss out a lot of parties, social events, etc...
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, I have fewer friends because of the SSCD.
What things have you stopped doing?
Going out, attending concerts, I stopped running because of the balance issues and therefore I gained a lot of weight
What do you think about the future?
I hope my revalidation goes quickly and that complications stay away. I hope to do the things that I missed out on for several years
So far, which years have been the best years in your life? What have you done during them?
My childhood years
What would you like to do if you didn’t have your condition?
Start running again and do sports, including horse back riding. Loose a lot of weight
If you had to describe your life in a sentence, what would it be?
A struggle with a lot of fogginess in my brain
Finally, what advice would you give to a person in a similar situation?
Find a good nose-throat-ear specialist!
