It took a long time to find out

By Ida, FOSMN syndrome, Norway, October 16, 2018

In 2002 my right cheek went numb. I told my sister, who is a nurse, and she immediately had my head scanned to check whether I had a brain tumour developing. Fortunately, I had not. Gradually the whole right side of my face went numb, it felt like when you have a local anesthesia at the dentist. Only it would not go away. I started going to the neurological department at my local hospital in my country, but they were less than helpful. They sent me to the ear-nose-throat department, whose medics of course were not able to help me.They 'sent' me back to the neurology department. This back-and-forth went on for about 12 years. No diagnosis was given.

In the meantime my condition worsened. My whole face went numb and I started salivating a lot, I started developing dysphagia and losing the ability to enunciate properly, dysarthria. I could no longer hold my head up, due to the wekening of my neck muscles.My lung capacity is noticeably weaker, and so in my balance. I fall a a lot! I have lost most of my strength in my arms and legs. now only my family and close friends understand my very slow and slurred speech.

2 1/2 years ago I was in Amsterdam and developed a so called 'artifical' pneumonia. These are hard to cure.I had started getting them every few months. To make a long story short, it would have killed me this time if I had not been in the Netherlands. Not only did the excellent AMC hospital save my life, they actualy researched properly into my neurological disorder and came up with the FOSMN diagnosis. In spite of there being no cure for this disease, I was mostly happy to finally, FINALLY, have a name to my condition! This was exactly 14 years after my right cheek went numb.

My life has changed drastically since then. I had to give up my job, and I require 100% gastric feeding. With no food entering my lungs, however, my pneumonias have dropped to only once a year. The good thing is all that I am still able to do: walk long distances, read, hear, smell, travel (with a suitcase full of gastric feed, but still). I am grateful for this. I feel myself going weaker (my jaw locks at times, standing up for more than a few minutes now tires me), and I wonder how long I will be able to look after myself.

Thanks Romano, for sharing your story before me: https://www.rarediseaseday.org/stories/6269

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