I have once a month b12 injections set up and repeat bloodwork and apt in July. Ordering normal cbc/iron panel. We are approaching it as: if my cbc is stable and the flc tests stay within normal ranges we will just keep monitoring. We are repeating the M tests every 6 months now.

If anything strays then we will react.

Since I have the mitochondrial and autoimmune disorders too the other dr runs his own extra tests and by now I feel like I am an honorary expert of my symptoms. I take lots of steroids here and there and have researched many mab’s so I feel like I will know when it’s time to advance my options.

7 years ago was my panic. I grieved and accepted what seemed to be the future. And although I know it is unpredictable, I am prepared to explore the options as they become available.

Since I had the BMB so early on we will repeat that IF my numbers become abnormal.

Oddly, I do indeed feel like I am better off now than I was in the beginning. I have specific areas of relevancy to focus on instead of unanswered questions; that is the comfort that I feel. I’ll take it!

I also look forward to guiding myself from what I can learn from other’s lived experiences.