I've been thinking of you since Tuesday morning and hoping that your neuro-immunology appt went well. 🤞🏻
It did go well. I’m sorry I didn’t update but I’ve been bedridden most of the last 2 weeks with severe symptoms. I’LL try and summarize the appointment!
The doc along w 2 residents who are working with him met with me, my husband and mom for about an hour and a half. He was super thorough and understanding. What came out of the appt:
1. He’s doing some additional testing, including the Mayo Autoimmune Encephalitis Panel. After all of that comes back, he will formulate treatment recommendations.
2. He was VERY concerned with the Anti-Hu antibody that came back positive in December. He said I should have had a full cancer workup when that came back positive as that antibody doesn’t just pop positive for no reason. I’ve had a subsequent test come back negative, but he’s repeating it again just to make sure. IF it comes back positive, he’s sending me for a full cancer workup including a full body PET scan.
3. As for CellTrend and Cunningham, he was concerned with those, while at the same time recognizing the medical validity of them. He was NOT dismissive of them (unlike my autonomic neuro), but rather acknowledged that there are studies that back up those antibodies, and that they can be “indicative” of certain disorders (like POTS), but the difficulty lies in that there are not big, double blind placebo controlled studies that say X antibody = Y disease…such that the FDA had recognized that these antibodies are determinative of a certain disease. And the only reason this is is because these antibodies are new(ish) and there just isn’t research funding behind them.
4. Because of the severity of my symptoms, and #3, he said it absolutely merits a trial of some sort of immunomodulators. Steroids are out given my previous reaction to them. So, once we get the remaining tests back, he’LL decide whether it’s IVIG, PLEX, or a medication like Rituximab. All are on the table right now.
5. We briefly discussed some additional neuro meds we may trial for the burning — he’s had the most success with Tegretol so that maybe the first one we try.
Bottom line is he was super caring, very thorough, and willing to go to bad mat for me for, at least at a minimum, a trial of immunomodulators. He has experience getting IVIG approved, and didn’t seem phased by needing to do some “work” in order to get it for me. 💪🏼💪🏼💪🏼