I was diagnosed with EM last July but have been monitored for elevated white blood count for many years. Even though I asked my diagnosing doctor if the two were related, her answer was no. I saw my primary care doctor yesterday for my third round of treatment for flu and cold that has been going on for three weeks now, and he mentioned again regarding my continued elevated white blood cell count. I am in the process of being fitted for a spinal nerve stimulator. My question is, have any of you that suffer with EM been told your white blood cell count is elevated? My primary said if it is elevated again in a month, he is going to insist that I get a bone marrow biopsy to see what’s going on. I’m just wondering if I should hold off with the stimulator if there is something more going on because of the high white count. Any feedback is welcome. Thank you.
Your doctor is correct that EM would not cause an elevated white blood cell count. However, if you’ve been sick with influenza or a cold (rhinovirus) that could be reason for the elevated count. How high is “elevated” in this instance? If it’s far out of range of what a routine infection would cause or if the elevation predated the infection, I would go for the bone marrow biopsy now.
The reason I say that is because erythromelalgia secondary to a myeloproliferative disorder can predate the cancer by one to two years. So if you’re seeing not easily explained abnormalities in your blood counts and were diagnosed with EM last year? That could be cause for concern. A caveat is that the myeloproliferative disorders most closely associated with erythromelalgia are polycythemia vera (red blood cells most affected) and essential thrombocythemia (elevated platelets).
The elevated white count has been going on for at least five years.
So it is best to hold off on the stimulator at this time and focus on the bone marrow biopsy in order to rule out other diseases?
If you’re having the spinal nerve stimulator implanted only because of the erythromelalgia, a bone marrow biopsy to first rule out an identifiable secondary cause for the EM would be prudent. It sounds like your doctor thinks you already should have had a biopsy if he is saying he will “insist” to one next month if the count remains elevated.
Thank you your support. I will follow thru with the bone marrow biopsy to see if that takes my care in a different direction.
Important to any final determination are the actual numbers. If only slightly elevated, there could be a benign reason. Having a hematologist evaluate your results to determine the efficacy of a bone marrow biopsy would be a good first step to pursue.
Mine was elevated, off and on for years until I was diagnosed with chronic Lyme disease! Do you have other symptoms that they can’t explain?