I haven't been here for awhile. I've been busy dealing with the interaction of Porphyria and Polycythemia Vera. I went to Mayo again to have a shot of p32, radioactive phosphorus, which is lowering my platelets (they are now normal). I also went to Johns Hopkins and talked to the ultimate expert on Polycythemia Vera. As you all know, I am not sure whether my neuro symptoms are partly MS and partly Porphyria-caused, and I explained this in detail to a high school student who is thinking of becoming a doctor; I talked to him about it at the request of my pcp. Because Porph is a neuro disease in part or actually mostly, and some symptoms are the same as MS symptoms.
I am busy baby sitting on Wednesdays, my two grandsons ages 8 and 10, and it's always early to bed time after that workout. But my feet are hurting somewhat less since I had the p32. The wonderful specialist at Hopkins explained that the neuropathic numbness and tingling in my feet and ankles is, indeed peripheral neuropathy, while the pain is more likely Erythromelalgia, due to the small vessels in the toes and lower foot reacting (inflaming?) due to the blood changes of PV. Good to get that straight, as most doctors just look blank and say they don't know anything about this foot pain, or it isn't related to the primary diseases.
I lost a little weight by watching portions, and thus a little of my pot belly; I feel better that way, hope I can continue this.
My second visit to Hopkins was, like the first one, a thrill, because the facility and the city are so different than what I'm used to, so beautiful in many ways. The architecture of Baltimore I love--so varied, so old and dramatic. The weather in spring there is wonderful for this desert rat--we had a lovely rain which made the air humid, and my hotel had openable windows; to hear rain drops on the surrounding roofs, wonderful, like the old days in Seattle when I was a child. And I could walk further than usual because I descended 7000 feet to low altitude. I would like to go again just to see the interiors of museums. The oldest building at Hopkins is an art gallery as well as a medical place, and worth a look!
Love to all, Mariel