As an update, I am doing much better since my diagnosis in February. With IVIG taking, I am back to work fully now and even driving the 1 1/2 back and forth 4 times a week. I'd estimate I am about 80-90% physical endurance what I was (limb strength). Very grateful and I know its a month by month journey.
My main struggle is mental fatigue and exhaustion late afternoon, crashing when I get home (not ideal with a family). I pretty much start feeling the fingers tingling around the 4 week mark; so that is my cycle time for IVIG. Neurologist said energy loss is par for course with CIDP, but what I am feeling seems more like the "borderline anemia" it took months to diagnose in 2014, including the memory fog. So, my MD issued some bloodwork , which came back showing RBC count issues, among other things. She released my labs online with a note that the anemia is back and to reduce my B12 supplementation, which registered above limits. No suggestions, no confirmation of what type of anemia I had. Anemia before CIDP was iron deficiency (blood loss, diet driven), but I got it under control with supplements.
Now, I questioned this time being iron deficiency, because I've made dietary changes, including adding fish back to my vegetarian diet months ago, continuing my supplementation, and have controlled some other issues that caused iron deficiency. Yet, my blood-work is showing it's back. I see the protein and signs of inflammation, which I expected. Using reputable hospital publications:), I triaged the "decision tree" on types on anemia and came to the conclusion that I likely did not have iron deficiency anemia again (iron, b12, stores ok)- MCV pointing also to something else. So, I reached out to a hematologist who reviewed my actual labs to confirm, no this does not point to iron deficiency/nutritional anemia. The answer was it is likely an hemolytic anemia or one associated with chronic disease and there are follow up tests required (reticulocyte, etc.). Only if this returns normal, could there be a bone marrow pathology to explore. I am not jumping to conclusions here, because I feel the likelihood is the autoimmune connection. However, I find that I have to identify these issues myself a bit frustrating (no different than the CIDP diagnosis). Fortunately, the "trust but verify" is natural to me.
Given this possibly could be related to my CIDP condition (and that I thought I saw anemia can be a side effect of IVIG?), shouldn't these types of issues be monitored more closely? Who takes charge, the MD or neurologist of inter-related auto-immune issues (besides patient)?
I really appreciate the resources and support I have!