I’ve had some interesting responses to my “hives” issue. A lot of what was sent to me was info I had already come across but it still was appreciated.
The hives have gotten to the point they are defining what I do and what I don’t do. I continue to do ‘online research”. I have a new family Dr who I saw for the first time a little over a week ago. He was so alarmed by my low white blood count that we didn’t even get into the issue of hives. I told him that for the past 5 years I have had low WBC and I have been to an oncologist, a rheumatologist, and even a heart specialist. I have had all kinds of lab work (including things like anti double stranded DNA…whatever that was for) as well as having bone marrow test and no one can find anything causing the low counts. The normal count is at least a 4 or better. Sometimes mine is down as low as 1.7. I have other counts that are out of whack as well, but I guess they “fall in line” because of the low WBC.
This past Tuesday, I had my yearly lab work done as well as contributing about 5 other vials for other tests. My new Dr really wants to come up with why this is going on and the phlebotomist told me that some of the tests he ordered were tests that none of the lab workers were even familiar with. I asked her if she could tell me about them and she started rattling off a bunch of acronyms which didn’t mean a thing to me. Whatever these tests are, they have to be “sent away” instead of being done at the local hospital. I think she said they went to some place in Wisconsin. So with all of that going on, my follow up appointment was supposed to be the 23rd but because there is a possibility the tests won’t be back by then, I was rescheduled to the 30th.
So in the meantime, my hives were driving me nuts and I got to thinking, my hives started about a year after we found out about my low WBC; hmmmm….wonder if there is any connection? So I started doing searches on “allergic to the cold” (because that is basically what is going on with me). This led me in a WHOLE different direction and came up with a WHOLE different conditions/diseases. One of them is something called cryofibrinogenemia. Ya, pronounce that for me. And what I can find online about that is NOT written in laymen’s terms. But what I think it boils down to is that the cells become cold and it does have to do with the immune system (which basically I don’t have one).
When I told the new Dr that I had given up trying to find out about the low blood count and that the only thing I could come up with was research I had done on hiatel hernia’s (which I found out 2 years ago I have a large one) says that this type of hernia can affect the immune system. I was just gonna let my low counts be attributed to the hernia and try to forget about it. After you’ve been tested and prodded and seen all kinds of specialists and no one can come up with anything you figure you might as well just live with it.
So, I don’t know whether to be excited about these tests or think “here we go again”. If there is something that can be done for these hives and for me being cold all the time, that would be GREAT!!!! I have been a cold person all of my life so that part is nothing new. I’ve always been told “Cold hands, warm heart!” And I really don’t want to move south of the equator!
Our New Normal
4 weeks ago