- CASE FILE
It started over 3 years ago, like Guillian-Barre, quickly progressing to a debilitating disease with no name. God Bless you for any help ?
ABOUT THIS CASE FILE
It started back in the fall of 2015, like Guillain-Barre. My left foot started going numb and tingling. It quickly progressed into my right foot, both ankles and legs and then my hands, wrists and arms.
I have been to 4 major medical facilities and still have no answers as to the cause, a name or a treatment other than pain and nerve medicine to try and make life somewhat tolerable.
I have been told I have small fiber neuropathy, autonomic neuropathy, diabetes, which was not the case until almost a year into being sick, and polycythemia.
I have what feels like bone pain in all extremities, I have lost most of my muscle/strength. My muscles literally start shaking when trying to do things. This from a guy that used to spend 4-5 days a week in the gym and was in GREAT shape.
After working at the same business for 27 years, and the last 15 doing the same job, I had no choice but to step down. I use to work 50+ hours a week, but now can barely work 25 and that’s doing very little while I’m there.
It feels like the “bone pain” and muscle weakness is continuing to progress towards the core of my body, which makes me concerned as to where it’s going to stop.
I also have excessive intolerance. I can do things any average person could do and within 24-48 hours I suffer for it. Whether it’s in the form of much worsening pain or complete exhaustion that takes me says to recover.
I have been to ECU, UNC, Duke and Mayo Clinic and still have no solid answers. It’s like I don’t fit in any medical box, not even the odd ones.
My hematocrit and hemoglobin are both high, not into the “dangerous” levels, but high none the less. I currently have phlebotomies every 3 weeks to try to lower them.
I am one of those “wait and see what happens” patients at Duke. A great facility, but they are missing something somewhere.
Most days I feel like it could be my last, but I just suck it up, put on a smile and do the best I can. I pray someone here will try to help me get my life back, as this unknown disease has turned my and my families life upside down.
(I shared a picture of what I looked like before I got sick. That same person now has trouble walking up a flight of steps as I physically just can’t do it)