This article delves into the personal experiences of individuals facing rare medical diagnoses, highlighting the challenges, emotional toll, and ultimate strength they demonstrate in their pursuit of answers and treatment. The author shares their own story of a grueling medical journey and invites others to open up about their experiences, fostering a sense of community and understanding.
to a rare medical diagnosis , and asked others to open up and do the same. Before I go on to share what people had to say, let me first say, thank you! The first few years being in and out of the hospital were tough. In fact, some days were so bad that I wondered if I was going to make it home. People questioned if I was lying when I said I was sick because I didn’t have a cough or runny nose.
I was put on medication for years until the disease progressed, and I could no longer tolerate the medicine. Two weeks before COVID lockdowns hit, I had a procedure done by a neurosurgeon, and have been mostly pain-free ever since. Had I not been lucky enough to have a very well-educated endocrinologist as well as to live close to a nationally renowned TN expert, I have no doubt it would have gone undiagnosed for a long time.
“I was vomiting, blacking out, and had chronic fatigue all through my teens. I was put on numerous SRIs for anxiety.”“I then suddenly lost six stone in 12 months. I went to A&E daily for 2 weeks to be told it was all in my head and referred to the mental health team.In elementary school, I was always falling down on the playground. I had issues with my joints that would send me to the emergency room. I would bruise easily.
It’s impacted my ability to work, socialize, and sleep. I’ve had difficulty getting time off from my employer to go to appointments and have even been written up for going just a few hours over my sick time. But, I’m carrying on. I’m very lucky to live in a city where I have access to good health care. I exercise, eat well, drink water, take my medications, and go to my appointments. I am slowly learning to live with pain and really soak in those good days.
In 2019, the meningitis continued, and in May, he had a grand mal seizure. Two weeks later, in June, we got him to UCSF where they completed a three-hour interview. Later that night, they rushed an urgent list of 10 new tests and gave a recommendation on how to stop the meningitis.
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