I had my first appointment with a neurologist today (Dr. L), due mostly to my ongoing hand and foot pain. I told her that dating back to at least February, on a nearly daily basis, I have pain in my fingertips. The good days are days when the pain is only in my fingertips and not severe enough to bother me when I type (like today). As it gets worse, the pain moves into my palms, and also affects my toes. When it gets still worse, it moves into the back of my tongue, making it more difficult to speak and swallow solid foods, and also into my eyes (or more likely the nerves behind my eyes), making it uncomfortable to move my eyes or refocus them.
First the doctor asked me a long list of formulaic questions, such as whether I had fallen and hit my head. These seemed routine and pointless. Then Dr. L had me perform a number of tests for dexterity and coordination, not unlike a roadside sobriety test (walk on a line, heel-to-toe, heel-to-toe). I passed all of these test because my issues are more about pain than dexterity (although the latter does seem to come with the former sometimes, or on very bad days.)
Based on my description of symptoms in various parts of my body and on both sides (bilaterally), Dr. L said the issue likely originates in my brain stem or upper spinal chord. That is the only logical explanation for symptoms that affect both sides of the body and in such diffuse locations. This was not a surprise to me having been a part of the ME/CFS world since 2011 and having read many theories about ME/CFS potentially originating in the brain stem.
Dr. L ordered an MRI to rule out Multiple Sclerosis and a brain tumor. although both are very unlikely. The MRI will be with contrast, which requires injection of a dye into my bloodstream. I know some ME/CFS patients have reacted badly to the dye, but I have had a CT scan with contrast since first coming down with ME/CFS and I didn't react. I hope this time will be the same.
Dr. L stated that if the MRI fails to produce any remarkable results, she will then probably order blood work [total waste of time] and possibly also nerve testing [possibly fruitful.]
I'm aware of Dr. Cheney's work with MRIs of ME/CFS patients which showed they have brain lesions. My understanding is that the lesions were in a different pattern from those found in MS, but nevertheless distinct from what one would expect to see in healthy controls. So it will be interesting to see if Dr. L notes any such brain lesions in my MRI. I should have the results by the 3rd or 4th week of July...