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 [...]
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 [...]
Filed under: Uncategorized | Tagged: gallium scan, nuclear medicine, patient point of view, Sjogren's Syndrome, undiagnosed chronic illness | 15 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 [...]
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 [...]
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. [...]
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“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 [...]
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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 [...]
Filed under: Uncategorized | Tagged: deafness, patient point of view, undiagnosed chronic illness | 1 Comment »
Why does Medrol take it away? (sung to the tune of Lenny Kravitz, “Are you gonna go my way?”) Medrol AKA Methylprednisolone can be magic for me. For those of you not in the sicky world – it’s basically steroids. Yesterday, my trapezius, sternocleidomastoid, and arm muscles were so spastic and weak, I couldn’t carry [...]
Filed under: Uncategorized | Tagged: medrol, sternocleidomastoid, undiagnosed chronic illness | 4 Comments »
Doctor D was so kind in nominating me for a MedGadget Medblog Award for Best Patient’s Blog. I made it as a finalist. The polls are open until February 14, but it’s no surprise that I don’t have many votes. If you are so inclined, you may vote by clicking here and/or check how I [...]
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January 22, 2010 Dear Dr. Neurologist, I am submitting the MRI pictures for my brain, c-spine, t-spine, and l-spine, all taken in March 2009. I have also included reports. At this time, I have been experiencing an increase in my symptoms. My impaired ability to dorsiflex my left foot typically fluctuates from mild to severe. [...]
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