The 13 vials of blood came back negative for every antibody and every thing else tested except for my ANA, which was low.
It still amazes me that I definitely have a goiter on my thyroid and yet not a single antibody to prove it’s there. I am atypical they say.
Seems to somewhat amaze my docs [...]
Filed under: Uncategorized | Tagged: autoimmune, undiagnosed chronic illness | Comments Off
When you’ve had 13 vials of blood taken, a gallium scan, thorough neuro exam, and 3T MRI, you hope to know something. Anything!
C’mon – there MUST be some sort of results somewhere.
When none of your doctors are returning your calls, you realize they are still working on your puzzle pieces, but you want them to [...]
Filed under: Uncategorized | 5 Comments »
Thank you for sharing the slideshow, Dr. Chwistek.
I often wonder why many physicians I’ve seen seem to lack empathy. Particularly the docs who have blown me off completely. I’ve learned that the doctor-patient communication success is all on me.
If I let anxiety or other emotions overwhelm me, a doctor isn’t going to reel me in [...]
Filed under: Uncategorized | Tagged: doctor patient relationship, empathy, undiagnosed chronic illness | 5 Comments »
Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering. – Paulo Coelho
I’m having a recurrent dream.
My Primary Care Physician calls me and says, “I have your results.” And I say, “There was nothing.” “Yep, nothing. Everything came back normal. I’m so sorry.”
And from there [...]
Filed under: Uncategorized | Tagged: devic's disease, neurological, Sjogren's Syndrome, undiagnosed chronic illness | 9 Comments »
Pre-Scan
On day 2, the injection of radioactive gallium citrate, called the tracer, had
made its way through my body. I explained to the tech that I am a patient blogger and my fellow patients were also fascinated by the lead encased syringe. The department now wants to check out my blog.
I was dressed comfortably in preparation [...]
Filed under: Uncategorized | Tagged: gallium scan, nuclear medicine, patient point of view, Sjogren's Syndrome, undiagnosed chronic illness | 13 Comments »
So you’ve got unexplained inflammation that no one can diagnose and you’re having a Gallium Scan! (also called a Gallium 67 test)
I thought there was a lack of information about thyroid biopsies when I wrote my posts about that. I thought there was a lack of information about muscle biopsies when I wrote about that [...]
Filed under: Uncategorized | Tagged: gallium scan, nuclear medicine, Sjogren's Syndrome, what to expect | 6 Comments »
I was hoping to never see another Neurologist ever again. That was before I met Dr. B and Dr. L.
I was taken completely seriously.
In fact, when I mentioned to a room full of medical professionals including Dr. B. about what University Neuro doc said to me , they all expressed shock, disapproval, and disbelief. I [...]
Filed under: Uncategorized | Tagged: 3T MRI, brisk reflexes, doctor patient relationship, gallium scan, joint pain, neurological exam, neurologist, positive ankle clonus, Sjögren's | 14 Comments »
I’d like to thank everyone who shared their opinions about what to wear to medical appointments.
I believe I hit the mark today with a blazer, slacks, and casual-type shirt. I felt confident and was taken seriously.
I have much to share about today’s appointment with Neuro #4 and his wonderful Resident MD, Dr. B. But for [...]
Filed under: Uncategorized | 1 Comment »
“Those without expectations are never disappointed”
The fortune cookie paper with this statement remained taped inside my journal for years. Then, a wise man told me, “those without expectations soon die.” And, that made a much bigger impression on me. It’s my hopes and dreams that keep me going.
Still, somehow I worry that if I get [...]
Filed under: Uncategorized | 7 Comments »
Snowy driveway. Engine is off.
The only sound I can hear is the low buzzing of my left hearing aid. What is it like to be hearing? Wondering what sounds I’m missing.
Breathing.
Must pull it together. Can’t hear my own breath. Convinced I look like I’ve been crying, no need to confirm with the mirror. My [...]
Filed under: Uncategorized | Tagged: deafness, patient point of view, undiagnosed chronic illness | 1 Comment »
