rblog

I realized that there are folks who are interested in what is happening with my mystery disease and I realized I needed a way to keep everyone updated and that it would be also good to keep a written history. And then, duh, I remembered I have a blog! (They had better do a brain MRI just to make sure I still have a brain!). So I will start with the most recent entry and then work backwards to fill in the past.

Today I went to see Dr. Ari Green at the UCSF MS clinic as my primary neurologist (Dr. Ann Poncelet) believes that my neuropathy is actually due to "central" causes rather than "peripheral" causes. The session with Dr. Green was the standard initial consultation, pin pricks, family history, etc.

Key items:
* He dilated my pupils to determine the state of my optic nerve - it was in fine shape.
* He did an eye test, at which I did surprisingly well as I thought my vision was in worse shape
* We discussed vitamin deficiency, specifically vitamin B-12. There was a good write up on this topic here. However, my Vitamin B12 was tested in March and I was at the high end of normal. However, we are running some additional blood tests to look at homocysteine levels - which go up as B-12 goes down. If homocysteine is elevated there may be a very very simple "cure" - but I don't think this is likely.
* Two new terms were introduced into my medical lexicon -
a) posterior column disease - If Dr. Green had to guess what I had, his hunch would be posterior column disease. The clearest description I could get of this was "The posterior columns in the spinal cord can be damaged due to B12 deficiency (which can take years to show up). Inflammation and degeneration of the dorsal roots cause secondary descrution of the posterior columns of the spinal cord, which results in impaired vibration and position sense and decreased tactile localization. "
b) myelopathy - This is a more general term indicating problems with the spinal cord itself as the root cause of the neuropathy.
So, as a completely speculative guess, based on intuition rather than data, would be that I have a myelopathy (e.g. problem with the spinal cord) and in particular, problem with the posterior column. But there could be several causes for that - but most of them have been ruled out, well, actually all of them seem to have been ruled out - but we are re-doing the Vitamin B-12 test.

Tests taken:
* Blood tests - Vitamin B-12 and related tests, but I don't have a copy of the workup and results are not yet available.

Next steps:
* Dr. Green would prefer getting a Brain and C-spine MRI as I think I had a Lumbar and Thoracic spine MRI the last time. If those are clean, he would go for the LP.
* But it is Dr. Poncelet's call as to whether we do the LP first. I am leaning toward the MRI - although it would be 90 minutes long!!

And for those of you who are concerned about MS, it is still a possibility, but that explanation does not appear to fit the data as it currently stands, so I would be surprised if it were MS (Dr. Green agreed with that assessment - he also completely supported my approach to MRIs - which is to stay up late the night before and then try to sleep through the MRI).