on many pharmaceuticals-not a single one helped and in fact most made me sick. This goes on for 12 years. From the ages of 28-40 can you imagine if you just threw 30% of your life out the window?! I started a few months after I met my soon to be husband, so 99% of our relationship is eaten up by what we called Mystery Disease. Bright lights, loud noises, strong smells- all triggered this Mystery Disease. I had to hide in a bubble in a concoon. We aimed to micro-control every bit of sensory input in my life. Our anxiety level is super high, we don't go on trips much anymore.
In late 2015 while in the middle of giving a
In late 2015 while in the middle of giving a lecture on Opera (partly in Hungarian, no less!) I started to randomly go blind in my right eye. Maybe it will go away, I thought, like it always does ... A few days later I was heavily vision-impaired. The whole terrifying cycle of doctors and testing started again. Lots of ER visits, tons of MRIs and other scans, we finally figure out the first part of the puzzle, I have Psudeo Tumor Cerebri, a very rare condition where the spinal fluid pressure is abnormally high. My brain literally been squeezed for years this explains the
vision loss, the horrible stabbing pains and dizziness. I had to pull out (or kicked out) of almost all my singing jobs, which devastated me. What was the point of me being alive if I couldn't sing? I had to watch my hard-earned modeling career get flushed down the toilet.
More MRIs, more doctors, a few spinal taps (one of which went horribly wrong and hospitalized me with a very serious complication) were conducted.
I had a suspicion that I had Multiple Sclerosis since The Mayo Clinic suggested it as a possibility a few years back. I am finally fully diagnosed in early 2016- it was definitely MS. Almost 12 years to the day after the nightmare began. Out of all the many specialists I had seen over the years, only The Mayo Clinic had even suggested it might be MS. I am so grateful to my incredible medical team here in Buffalo for finalizing the diagnosis and beginning to treat me. I am blessed with helpful friends, supportive family, great doctors and The most angelic, wonderful husband in the world. I still considered myself a lucky girl. Now I'm just coming back up to speed with a full season of singing and modeling ahead of me. I can't do as much as I used to so I take a fewer but higher quality jobs.
Most people were very sad when they heard about the MS and Pseudo Tumor diagnosis, but I was pretty relieved. I would rather have something known than a mystery disease, however horrifying. I was waiting for the light all these years. The light of diagnosis, the light of treatment, the light of knowledge and support. And I will fly right into it ...
blossoming and blooming. My broken body is the cocoon from which my butterfly spirit emerges!
Written By: Suzanne Fatta
Model 53