Well, I’ve officially had a change of diagnosis!
On Tuesday, I saw my primary care who took the time to call my hospital neurologist and talk to him about my specific symptoms that don’t reflect my Guillain Barré diagnosis. He agreed with her and sent an urgent referral to an outpatient neurologist that he knows. That office got me in this morning (Friday), which is a crazy-fast turnaround time for the hospital system! I am so thankful.
The neurologist today said that my symptoms are classic for Transverse Myelitis (not Guillain Barré) and agreed that I was misdiagnosed. My original MRIs didn’t make the spinal cord damage obvious because they weren’t taken with contrast (something put through an IV during the procedure). I’ll be getting new MRIs and some blood work done as soon as they can get me in.
Transverse Myelitis is caused by inflammation of the spinal cord and is considered a type of spinal cord injury (even though it’s not caused by what we would consider an “injury”). This new diagnosis has a smaller chance of complete recovery, but the neurologist is optimistic in my specific case. There’s no cure or even treatment at this point, but the IVIG I had in the hospital was beneficial for this, which is good and probably helped with my healing process. My next steps are imaging/blood work and continuing with my physical therapy.
I sure appreciate everyone’s continued prayers! It’s been such a wild ride and looks like it’ll continue to be for a while to come! I’m still processing the change of diagnosis and prognosis and praying that I end up in the 30% that heal fully. Thanks for praying with me.
– Judy
