Not The News That Was Expected: What Now?
I am trying to make sense of what happened last Friday at Johns Hopkins. Dr. Nguyen shared so much information with my mom and I, but I didn't expect to hear what he said.
Are you ready?
I don't have a muscle disease.
You read that right...I don't have a muscle disease. According to this Johns Hopkins neurologist, there is no evidence, whatsoever, that I have any muscle involvement of any kind.
What does he think I have?
Wegener's Granulomatosis. He's not 100 percent sure though. He says I am ill...definitely have an autoimmune disease. Definitely nerve involvement...vasculitis.
Wegener's Granulomatosis (which is a disease that was mentioned to me over four years ago, but was ruled out!) is an uncommon disease that affects about 1 in 20,000 to 1 in 30,000 people. Symptoms are due to inflammation that can affect many tissues in the body, including blood vessels (vasculitis). It is also considered a disease of abnormal immune function.
According to research, there is no cure, but early diagnosis and proper treatment can be effective and the disease can be brought into remission with complete absence of all signs of disease. (Glory be to God!!!)
Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease.
Sorry I can't help pick you up off the floor, but you can close your mouth now! I must find humor somewhere in all of this, right?
Next step? I have to go back down to Johns Hopkins to their Vasculitis Center. I plan on seeing the best of the best at the Center...but...I have to start from scratch. And I probably need a nerve biopsy. OUCH.
Okay...so...what do I do with all of these feelings, when all the pieces of my life are scattered on the floor?
How am I supposed to feel? What should I do when the tears won't come out of my eyes?
I know that I was strong enough to hear the news...but initially I wanted to run away as fast and as far as I can. I feel broken, but I must press on.
I trust in a higher spirit to guide me in the right direction.