MrsD and all, I have MGUS. They tested me for this when I was undergoing further testing for Polycythemia Vera. It is much more common than PV or Porphyria, which I also have.
In fact, my doctor has it. In our cases, she says, our MGUS is so mild that we may never get Multiple Myeloma. But there you go, one more disease for me. I do have Peripheral Neuropathy, especially in my feet. It improved when I went for p32 (radioactive phosphorus) to Mayo Scottsdale in March. But now my platelets are rising again, and I am supposed to contact the radiation oncologist at Mayo if they go up to 800. Climbing slowly, though, so may be a while.
I have read from Dr. Spivak, famous hematologist at Johns Hopkins, that the main problem with platelets is not their number but their aggragation. I am thinking of getting an aggregation test, for which I'll have to go to a teaching hospital, to see if I really need the platelet reduction. My platelets were l,500,000 in February, came down to about 350,000 and now are 635,000.
I thus have four disease which can cause PN, and I am still walking--went out for half an hour's walk after dark tonight.
Incidentally, I find it interesting to consider if this problem is related to the "slow moving red cells" which Dr. Swank found in MS. In his test for MS, he puts a drop of oil on one's blood sample under a microscope, and if the oil slows the movement of cells, he thinks this is suggestive of MS. In fact, he dx'd my blood this way; I already had a dx from MRI and VER, but wanted to see him in person. I have been on his diet for over 25 years, with one deviation, eating a few more eggs than he recommended. If I get off it, symptoms get worse dramatically.
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