Finally got diagnosed!
I lost my job a little over 3 years ago after I caught Covid for the first time. I started getting strange muscle pain and tightness that got progressively worse.
I went on FMLA for a while, and my employer gave me a few months of grace after FMLA ran out, but I was so insanely stiff I still couldn't even sit at my desk and eventually they had to let me go for failure to return to work. It was a really dark time for me, as none of the doctors I saw could figure out what was wrong, and I went from specialist to specialist without any answers. Some doctors even tried gaslighting me into thinking it was just depression or anxiety. Meanwhile my muscle stiffness had gotten so bad, I spent almost every day lying on the floor because I could barely bend.
After years of advocating for myself, I finally got a referral to the Froedert Medical College of Wisconsin. I had to wait almost a year after scheduling, eventually I was able to meet with the head of neurology.
Today was my second meeting with him, six months after my first, and based on my test results and symptoms, he diagnosed me with Stiff Person Syndrome.
I've been on a low dose of Valium for the last year which has been the only thing that helped with the stiffness, but now that I'm diagnosed my dosage is finally being increased, and I'm getting a referral for IVIG infusions.
I'm so happy I'm done with jumping from specialist to specialist only to hear the dreaded "all your labs look normal." It took me over 3 years, but I'm finally free!
Tl;Dr - after 3 years of being disabled and losing my job, finally got diagnosed with Stiff Person Syndrome