OKAY! Here is the beginning of my saga, let me know what you think, as I am stumped. Looking back over the year I realise that I have been "out of sorts" since Feb, at least. Tired, not my funloving self, general malaise. (I know VERY DESCRIPTIVE,huh?? LOL) Frequent very bad headaches, usually incapacitating, also this lovely... ditzy brain. where I will forget questions in the middle of trying to answer them, as well as terms for work, what I ate.... basicly anything can be forgotten at any time, it seems.
The "new stuff" is; I found a tender swollen node along my occipital ridge, a few days later developed a red rash all over my body(... not raised and only slightly itchy, but looked like an allergic reaction), had another one of my wonderful headaches and then developed the worst pain I have ever had.... joint pain. When I say this I want to explain that I dont use novacain when I have fillings as I dont find them painful, natural childbirth for my kids, etc (I am sure you understand).
I went to DO and was tested for many things (he thought I had a virus), including but not only: Lyme, babesia, ehrlichia, mono, along with CBC etc.
Tests came back neg for Lyme and other tick-born disease, but positive for mono. I am not fatigued the way I would with mono, no throat issues, only the one swollen occipital node no cervical/ front or throat nodes involved.

The latest as of today is that he thinks I might have Parvo and is looking into that.....
Would love to hear what you all think, as I am at my wits end. The pain is excruciating and I am far too young to go thru life this way for the next 50 years..... waiting to find out what it all is.
any reccomendations as to what tests/results/and avenues to look into are greatly appreciated.
Ren

bump to the top please look

Hi & welcome!

About the tests that your dr. ran: Did he do ANA, and *also* specific autoantibody tests (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.? I ask because many drs. do just the ANA, then wait for a "positive" for calling for the specific tests. This approach didn't work for me, as it turned out I had the "subset" of SLE called SCLE, in which ANA can be *negative* as much as 30% or so of the time. (Silly me.) And even after I turned positive for anti-Ro, that ANA still stayed negative.

Was the test for mono EBV = Epstein-Barr virus? Mine was through the roof, but I didn't have mono. It can be very high in people with lupus, I was told much later. Researchers have speculated about EBV being possibly causal for lupus, but I don't conclusive evidence has been found. (Interesting, though, huh?)

Have you done much reading yet? Like the "sticky posts" at the top of the thread list, especially the "diagnostic criteria"? There's also a link in the one about "test results" that leads to good info. Pls, there are some good hardcovers, too, in bookstores & libraries, especially one by Dr. Daniel Wallace, and several by Dr. Robert Lahita.

Did you have your rash biopsied by a dermatologist (or dermatopathologist)? Did it recur? Scar? Depigment? Itch? (etc.) Biopsies can be invaluable in lupus, as lupus rashes light up under immunofluorescent stain tests in a VERY unique & identifying way. Would love you to post more about rash (I had arm/torso rashes for years...)

Am pooped & must get rest---but I hope you post further. Best wishes, Vee

WOW!!! Sounds like you're a mess. Hang in there as the Drs. will find out that it is. Have you been checked for Sarcoidosis yet? Many of the symtoms are that of Sarcoid. Good Luck.
Wes