seadragonsovereign
Well-known member
Had my semi-annual follow up with my neuro the other day. Not really any changes. In fact, he didn't even run me through the usual gauntlet of tests. Just sort of looked me over, ran a couple of things and pretty much said, yea still BFCS. Of course I pushed him on a few things, as my "continuous" areas have spread from my calf to now include my insteps (as well as the usual "around the world" twitching and jerking). But he seemed pretty adamant that it is BFCS. So I felt pretty good after the exam, but he did have me run a few more blood tests, including a re-run of my CK. But my good feelings came to an abrupt and quick end as I got the results back really quickly. The C-Reactive Protein Test came back at 5.1, where normal is anything below 3.0. And my CK went from 509 (last October) to 556. Also had ANA screen come back negative and sedimentation rate of 4 (normal 0 - 19). Still waiting on a VGKC test result. Has anyone else had a C-Reactive Protein Test done? I did research on the web and though it is normally done for heart issues, it could mean an immuno issue. I have an email into my neuro to get his reaction, but thought I would throw this out to the forum. As an aside, he did say he had 6 other patients with BFCS and in fact had another one that he had not seen in seven years who he saw a week before my test. He asked the patient why he finally came back and he said he just wanted to see if there were any breakthroughs. He was in the same condition he was seven years ago, no worse no better. My doctor did say he was thinking about getting together with some of his colleagues to pool together their info on us and try and come up with some commonalities (he has read the Mayo Clinic study). Sounds like a good research paper.
). He didn't volunteer that he had other patients, but he was quick to tell me when I asked. I guess everyone should be asking their neuro, too!