I met with Dr. M, an infectious disease specialist, today per Dr. R’s request to see if the frequent fevers/night sweats I experience are being caused by something other than my borderline SMM status.
Dr. M thinks I “may” have what is called a “Periodic Fever Syndrome.” My head is literally about to explode with all the new jargon and acronyms. TRAPS, HIDS, TNF… WTF! Ahhhh.
The results of the genetic testing (7 genes are tested for mutations) for this syndrome may take a couple of MONTHS. Ugh. More blood tests, more waiting. However, I’ve been reading a bit online about periodic fever syndromes and I don’t really think I match up with a lot of the symptoms. But I guess we’ll see.
Dr. M did some regular blood tests today too – some of which are still pending but some are already back – my hemoglobin is 11.3 (never been this low before!) and my hematocrit is 34.3 (low). Ugh.
Anyway, Dr. M says that there are 3 possible scenarios:
1. My fevers are due to the smoldering myeloma/MGUS
2. I could have a periodic fever syndrome AND smoldering myeloma/MGUS – two separate entities
3. The periodic fever syndrome is primary and is CAUSING the smoldering myeloma/MGUS. In his words it would no longer be “monoclonal gammopathy of UNCERTAIN signficance” but “monoclonal gammopthy of KNOWN significance.”
I’m hoping for scenario 3 because if I get treatment for these fevers the SMM/MGUS COULD POSSIBLY GO AWAY. I almost fell off my chair when he said this. Treatment for this syndrome would be a “TNF Blocker” which might mean an injection once a week. YIKES.
This could possibly be a total game changer, folks.
When I was changing into the gown for the physical exam Dr. M was gone a really long time. After the physical exam he explained he was gone so long because he was emailing this doctor at the NIH because if I do have genetic mutations in the Periodic Fever Syndromes Panel he would want me to go there to see him. He seemed really excited I could get a “free trip to the NIH.” Hah. I’m already GOING there in February for the Natural History Study of MGUS and SMM! More trips, more doctors.
Dr. M said I’m a “zebra”… a term I’ve never heard before but google says its medical slang for “surprising diagnosis.” Apparently, “zebra” refers to an admonition med school professors often give their students: “When you hear hoof beats, think of horses, not zebras.” It means, when presented with symptoms, first think of the common conditions that cause them, before looking for the rare ones. But…
I’m the really attractive one with the mouth open… :)
So we’ll see. Honestly, I am still trying to figure out all this new jargon and wrap my head around everything – don’t want to get my hopes up too high. Never a dull moment these days!