u/mushymozzerella

After years of high counts, im going to see an MPN specialist at Moffett in Tampa, FL. What should I expect for my first visit?

29M. BMI 27.4.

History of sigmoid volvulus treated with sigmoidectomy, kidney stones, Gilbert syndrome, and mild sleep apnea (home sleep study AHI 5.2). JAK2, JAK2 exon 12, CALR, and MPL were all negative on Quest NGS testing (reported sensitivity 5%). EPO was 6.1 mIU/mL (ref: 2.6→18.5) when tested. No stereotypical symptoms of high counts.

RBC, hemoglobin, and hematocrit have fluctuated since at least 2017 (the first CBC available at 19 years old). Platelets have consistently been normal. WBC counts have also been normal except during episodes of kidney stone passage or recent sickness.

Other tests:

Flow cytometry panel: Normal

Thyroid panel: Normal

B12 and Folate: Normal

ANA: Normal

RA Factor: Normal

Iron: Normal

LDH: 143 (ref range: 140 → 271)

https://preview.redd.it/ptxxxn0vmu7h1.png?width=1450&format=png&auto=webp&s=1972a1bf0eadd88e482f6346ef815e6072a43516

29M. BMI 27.4.

History of sigmoid volvulus treated with sigmoidectomy, kidney stones, Gilbert syndrome, and mild sleep apnea (home sleep study AHI 5.2). JAK2, JAK2 exon 12, CALR, and MPL were all negative on Quest NGS testing (reported sensitivity 5%). EPO was 6.1 mIU/mL (ref: 2.6→18.5) when tested.

RBC, hemoglobin, and hematocrit have fluctuated since at least 2017 (the first CBC available). Platelets have consistently been normal. WBC counts have also been normal except during episodes of kidney stone passage.

CBC History

29M. BMI 27.4.

History of sigmoid volvulus treated with sigmoidectomy, kidney stones, Gilbert syndrome, and mild sleep apnea (home sleep study AHI 5.2). JAK2, JAK2 exon 12, CALR, and MPL were all negative on Quest NGS testing (reported sensitivity 5%). EPO was 6.1 mIU/mL (ref: 2.6→18.5) when tested. No stereotypical symptoms of high counts.

RBC, hemoglobin, and hematocrit have fluctuated since at least 2017 (the first CBC available). Platelets have consistently been normal. WBC counts have also been normal except during episodes of kidney stone passage or recent sickness.

CBC History