I have an appointment with Dr. R next week, but I have already received all my blood work results. I also found out the bone marrow staining came back negative for estrogen and progesterone!
Almost all of my blood tests were within normal range except my hemoglobin, MCHC, and creatinine are just slightly below normal.
My M-spike is now .49 from .42 in December. Pretty much the same, not a huge jump, but I'd like to see it stay exactly the same or maybe GO DOWN. That would be great.
My IgG level is at 1520 (I'm IgG lambda). This is still within normal range (700-1600) but definitely the highest it has ever been. It's always hovered around 1000-1100 over the last 3 years since my MGUS diagnosis. IgG was 1200 in September, 1340 in December, now 1520 in January. My kappa and lambda levels are both below normal range but the ratio is normal.
I have lots of questions for Dr. R - mainly what next steps are going to be in terms of bisphosphonate infusions, monitoring, and family planning.
I have been corresponding via email with Dr. M, the infectious disease specialist Dr. R referred me to for my frequent fevers, who told me I am a zebra. Dr. M really wants me to go to the NIH to see Dr. DK regarding this possible periodic fever syndrome. We have sent the necessary information to see if I qualify to take part in their study. However, I really don't want to get involved with ANOTHER doctor (whoops, that sounds bad) unless the genetic testing comes back first and I do in fact have these genetic mutations that are indicative of a periodic fever syndrome. We are headed to the NIH next month for the Natural History Study of MGUS and SMM and it would be great if I was able to see Dr. DK while we are there but I doubt the turn around will be that quick.
Dr. M forwarded and CCed me some of the emails between him, Dr. DK, and the research nurse for the periodic fever study at the NIH. First of all, Dr. M described me as a, "lovely 29 year old teacher" which made me laugh. Lovely. Delightful. Yup, that's me!
Importantly, Dr. M asked Dr. DK, "Have you seen MGUS as a manifestation of periodic fevers? What about the opposite-- a patient with multiple myeloma in which the monoclonal protein affects one of the pathways involved in periodic fevers?"
Dr. DK's response was, "I don't think I have ever seen MGUS as a manifestation of periodic fevers, but we certainly have seen patients with myeloma presenting with recurrent fevers."
I still really don't think I have a periodic fever syndrome but Dr. M isn't relinquishing this possibility. According to Dr. DK, this periodic fever syndrome (if that is in fact the case) most likely isn't causing my SMM and the fevers might just be from the SMM. That's kind of a bummer. We'll see.
Maybe I'm not a zebra after all?
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