Medical Mystery (SOLVED), request for support

Hello, my name is Jacob Hoagland. I have been dealing with a mysterious and progressive neuromuscular condition that started slowly with physical symptoms in 2017. Over the last several months, since my COVID-19 hospitalization in January this year, my symptoms and their impact on my family and my life have significantly worsened to the point that I can no longer take part in several aspects of my daily life. My symptoms were episodic but always worse in the late afternoon and evenings when the activities of the day accumulated. I have historically been very bad at requesting help and support, I have felt like that was my role to fill and I have been facing my problem from multiple different avenues, and I have always tried to put on a happy face to appear strong and "fine" even when dealing with pain.

This is a very hard lesson that I am being faced with as my neurological symptoms worsen to the point that I have been unable to work due to my physical limitations, my medical expenses and emergencies (due to episodes of muscle cramping and loss of coordination resulting in injuries) have drained our families savings. My condition is still not fully diagnosed. The specialized testing is very intensive and will happen over the course of 3 days while I am at Mayo.

Regardless of the name of the condition, it has impacted my daily life and my relationships in significant ways. The constant pain and worsening activity tolerance has resulted in me losing the ability to do many things that I love including playing with my sons, performing physical medicine, exercising, and bowling which I am just hoping to return to this year. I have had to be on daily steroids recently just to function and incompletely manage my symptoms. I am realizing that by not letting other people in my life and all that care know, I am worsening my overall ability to care for myself and my family. Along with the severe muscle cramping which can result in torn muscles and significant bruising which episodically requires me to use walkers or crutches to walk, and progressive activity intolerance, I have been experiencing severe nausea, lack of appetite, and digestive upset that has resulted in a loss of about 20 pounds over the last couple of months. My symptoms continue when I am sleeping resulting in significant reductions in my sleep due to cramping, insomnia, resulting in worsening fatigue and stress in so many aspects of my daily life.

I am realizing (with the help of several amazing friends and family) that in order to survive this time I need to share this experience and welcome more support into my life. I have always tried to help anyone that I could and "save" others, but I was told recently that there may be people willing to help if I was honest, so this is me, being honest and appreciating any support possible as I try to get answers and support. I am a partner, a father, a physician, and I try my best to stay strong for everyone, thank you to everyone that can help me stay strong. If you would like to talk more or have questions about my journey, or other ways to support my family, or just to talk, please don't hesitate to reach out to me. Thank you again to all of those who have helped us and me during this difficult and uncertain time, you are appreciated more than you could ever know.