Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, July 23, 2017

MRI mostly negative, but huge sinus cyst visible

Last month I wrote about my consultation with a neurologist because of ongoing, intermittent pain in my fingertips and big toes, and a feeling of decreased coordination in my tongue.  The neurologist said that her first step would be to order an MRI, with and without contrast, of the brain and brain stem.

I submitted to the MRI about two weeks ago.  I was having a fairly good health day on the day of the exam - slightly above my baseline.  It was two hours of sitting absolutely still in a long tube.  The technician placed noise-canceling headphones over my ears and allowed me to listen to a Pandora music station of my choice.  I mostly rested in a sort of meditative state, listening to music, because what else can you do?

I received the results of the MRI on Friday.  They were negative.  The doctor and I clicked through the images on her computer one by one and discussed each individually.  It was interesting to see my own brain and eyes in such detail -- using my brain and eyes.

There were no signs of a brain tumor or MS, or any other abnormality.  I had read that the MRIs of ME patients sometimes show lesions, not unlike with MS patients, but in a different pattern from the signature MS pattern.  There were no lesions seen in my MRI.  There were also no signs of diminished white matter or any of the other abnormalities seen in ME patients in the Stanford study.  (See also, here.)  Although, for this second criteria, it's probably unlikely that the neurologist would have found or noted "a 7% reduction in white matter," for example, unless she was specifically looking for that or comparing it to controls.

My brain stem was normal.  The neurologist said that I have more spinal fluid surrounding my brain stem and spinal cord than most of her patients, which she said is good.  She was of course looking for issues that were totally unrelated to ME, such as when peoples' disks bulge and press on the spinal cord.

The next step is to submit to nerve testing by another doctor.  I think this is very unlikely to lead to any answers, but I will go thorough with it anyway.  I have heard of some ME patients who had significant findings from nerve testing.

The MRI did find a cyst in my sinuses.  I could see it clearly in one of the MRI images.  It seemed HUGE -- like the size of a small pearl onion.  But both the neurologist and the technician who prepared the report described it as an "incidental finding."  They don't recommending doing anything about it.  Google says most such cysts go away after a few years.  Still I can't help wondering if this is why I started suffering from daily sniffles and post-nasal drip a couple of years ago, when I previous had no sinus problems.