I appreciate the information about Lyme. It was actually one of the first things I came across once I started researching my own CBC results and trying to figure out what it was that the doctors were missing. And whether it pans out or not, whether you're right about the money issue involving treating Lyme or not, I know that there are many people who are misdiagnosed with MS that don't have MS at all. But, even though I know that to be true, it sort of astounds me--I'm begging for a diagnosis, I'd even take a misdiagnosis, anything to make me feel a little less alone and hopeless.
I want to elaborate on the rash, or petechiae. That symptom made me feel that whatever I have is either blood-born or is causing some disruption in my blood. The dermatologist was right when she said the lab thought it looked like Schamberg's Disease. It does. The problem is that it doesn't behave like Schamberg's. It reacted to the steroids and antiobiotics, almost like it took advantage of my suppressed immune system, and multiplied, spread all over my legs and up my back within a day. I found a picture that resembles what my rash looked like. I tried to take pictures of my own when it happened, especially after the derm seemed so confused, but I am so pale they would not turn out. I guess we know it's not skin cancer, huh?
Sorry, sometimes I have to laugh to keep from crying.
Obviously that's not my leg, but it's a pretty good resemblance to what I had. They were flat, and up close resembled pinpricks, almost like a bruise. They were red, did not blanche, and after taking the steroids for a few days they seemed to turn yellow or brown like they were healing and fading. Of course, that didn't last long.
Another thing that makes me think it's something reactive in my blood is that those patches would appear instaneously at a spot where I would be itching for no reason. My knee would itch, I'd scratch it, and a few moments later those spots would appear. It wasn't a result of the scratching, nor was it a result of pressure I was putting on my skin.
Now I still get the itching, but the patches are much less frequent. The original spot on my right knee is still there, the little bastard. And I do still get places on my body where it looks like my blood is seeping up to just below the skin, tiny red pinpricks, just not neccesarily in patches. But they have never been as bad as they were when they kept putting me on the steoids and antibiotics for the various viral infections they thought I had.
At this point, I'm not sure how much information is too much or what symptoms aren't really related, but for the sake of finding out what's wrong I reach for straws. One of those straws relates to my many bouts of illness in my childhood.
I remember being hospitalized and having to live on 7-Up off and on for weeks because of viral gastroenteritis. My mother said the infection was in my throat as well. I usually had three episodes of what mimicked strep throat every year before they finally took out my tonsils. Maybe they should have just left the damn things alone, since swallowing problems cropped up a few years later. (And just for amusement, for no reason whatsoever I typed "same" instead of "damn" in that sentence and had to correct it. Why do I write or type words that are not the words my brain wants to write or type? Who knows, but it makes my e-mails interesting). Now I don't have any reason to believe that childhood illness is relevant, except that I know some childhood illnesses are prevalent in people that later get diagnosed with MS. EPV, for example, it lives dormant in the body of someone infected for the rest of their life.
Like I said, I'm trying to get all of my records together, all MRI reports, the problem is finding the best person to take them to. I'm anxious about going to doctors now, because I feel like the more tests they do, the longer my list of failed attempts to get diagnosed will become. At some point, they are going to tell me that they either don't know what's wrong with and that I'll have to live with it, they will prescribe me drugs to treat some symptoms while my brain continues to disintegrate, or they will diagnose me with some BS made up "this is really just a descriptive name because we don't know what causes it or treats it" thing like Schamberg's Disease.
For a while I was most concerned about the pulsatile tinnitus, because everything I read indicated that it was almost always vascular if no inner-ear problems were detected, and I thought I would drop dead of a stroke before they could find the cause. Somedays a stroke doesn't sound so bad. I know that's a terrible thing to say, but my entire life I've been the smart girl, the braniac, the creative one, loved book, loved to write, wanted to be a teacher or a writer (before my guidance counselor told me print was dead and to give it up). Now I have moments where I don't recognize the entrance to my subdivision, it looks sompletely remodeled (it's not), I had a moment where I didn't recognize myself in the mirror, I was shocked to see me. And yes, I have honestly forgotten how old I am at certain times.
So do I take all of my medical history to a neurologist, and ask that they do a MRI following the MRI protocol? Do I see someone who specializes in infectious diseases? For some reason I believe my PCP tested for Lyme, he tends to be more conservative and less pill-happy than some of my other doctors, and I believe he did it after the rash, though he said it was not a Lyme rash.