rblog

Today I met with my neurologist to check in before the spinal angiogram. From the exam point of view there wasn't much new to report - the neuropathy progresses slowly, in step-wise manner, at about 4-6" per year. No other obvious changes (reflex, muscle, etc.).

Summarizing the key abnormal findings (from the dozens of tests)
* Slow neural transmission, but only when measured foot-to-brain - indicating the problem is in the spinal cord, not a peripheral neuropathy
* Protein in the spinal fluid - indicating some non-specific, but definitely real, problem
* A slight irregularity in B-12 and related levels in the past
* A prominence/bulge in the MRI that could indicate a dural AV fistula

There isn't an "obvious path forward" as doing something (spinal angiogram) and doing nothing both have risks. Coincidentally, both have the risk of a spinal cord stroke/paralysis - with the same odds (at least to the nearest order of magnitude - about 1 in 10^5).

Our plan is the following:
1. More tests while we wait to reimage
* Some additional tests/re-tests. In particular, we will do our first genetic test (for spastic paraplegia)
* We will also look at a slow acting virus, HTLV
* Also we retested B-12 and related substances such as homocysteine
All of these are long-shots, but then again all the more obvious candidates have already been tested.

2. Around February, we will do another MRA - this is the special MRI that traces blood flow. We will focus on the area where the "prominence" was seen and determine if it looks any more prominent. If it does, this would support the dural AV Fistula theory.

3. If AV Fistula seems to be indicated, then we will reschedule the spinal angiogram surgery. If not, then we will keep looking for a cause, probably along genetic lines.

Update in about 2-3 weeks with the results of the blood tests.