Today's Visit to a New Neurologist

[Guest guest]

I went today to see a new neurologist, Dr. C. It was an edifying

visit, and I hope the beginning of a new chapter in my search for

medical answers.

Dr. C radiates intelligence, has the most alert, perceptive gaze I

have ever seen in a clinician. She told me more about my illness

from simple observation than many doctors have from an arsenal of

tests.

Dr. C is well versed in neurological, late-stage Lyme disease, MS

and Alzheimers. Listening to her think out loud about the diagnostic

issues in my illness was fascinating.

Dr. C says that yes, untreated, symptomatic Lyme disease can cause

substantial brain volume loss. She acknowledged that it is not

common, but pointed out that the whole presentation of my illness is

unusually severe and typical of someone who's gone untreated with

symptomatic Lyme for a long period. Dr. C suggested in my case that

period probably extends back farther than 1998, when I first sought

medical hellp for memory and concentration problems, misdiagnosed at

the time as adult ADD.

At the same time, she felt it was irresponsible not to actively

consider both MS and Early Onset Alzheimer's, and to keep testing

until we have a better basis for ruling those out.

She performed a neurological exam and during the " follow the finger "

test detected that my eyes weren't focusing properly, asked if I was

seeing double. I was very impressed, because I was just opening my

mouth to mention it when she asked. She proceeded to carefully map

out which areas of field of vision had the worst doubling.

She asked me to walk, and observed " big, visible spasms here and

here " (pointing to my cervical and lumbar spine). She also commented

on my gait, saying it showed extensive guarding and an ecccentric

distribution of weight common to people who have suffered long term

from pain along the spine.

Dr. C was enthusiastic about IVIG, saying it can help with Lyme, MS

and AD all three. She mentioned that it could be a difficult

treatment, talked about spreading it out over more days, to give my

body more time to adjust. We'll revisit it at my next appointment

with her 5 weeks from now.

UCSF had provided Dr. C with some notes on their findings but not

the MRI film and neuropsych report we specifically asked for.

Typical. We'll try to have those, as well as my other MRIs, for the

next visit. The notes and my description of the radiology report

seemed to give Dr. C a pretty clear sense of what we're looking at,

though.

In terms of treatment priorities, Dr. C was adamant that we must see

me complete a good course of IV Rocephin, soon, because until that's

been done no test can tell us much about the degree to which my

symptoms are due to active Lyme infection in the brain. Even

antibody levels in CSF are unreliable because they depend on the

immune response.

On Monday I have my first appointment with a pain specialist, where

the stakes are more immediate and at this point about as urgent as

they could possibly be. It will be a huge deal for me if that goes

well.