Hello everyone..I introduced myself in the "introduce yourself forum" last week. I have been mostly in my bed for the past month-with some ventures when I have a burst of energy-out with friends to the dinner, or doing things with my children, or studying for my Phd work. I am on Temporary disability and in the worst flare ever. I am in constant pain, joints, muscles, fevers, infection is raging in my mouth(um..yuck), no energy past a few minutes, dry mouth..like a big desert in there..chest pain, a bout of pericarditis...a few little partial seizures... tripping on my feet when I do walk, cramping in my feet when I am still, headaches coming back, losing weight(I feel like I should be gaining a million pounds with how I do nothing!)......but I am writing for support...I am writing because I sit here confused by my doctor..she treats me on one hand..confuses me on another....
I just had a terribly frustrating visit with my rhuemmy. It was the most confusing thing ever. She starting out talking about psychological stuff (it's all in in your head-- is all I heard)..this actually MAKES me depressed, because in the meantime she has been treating me with medication for lupus and telling me on other visits the only reason I don't have the dx is b/c the blood work has not shown. Then after the physical examination...she tells me I have a mouth infection common for immuniosuppressed people, I have a sore on my head to be biopsied b/c it looks like discoid lupus, and I have to get an EMG b/c my muscles are weak and cramping and she suspects muscle disease, but it is likely part of the connective tissue disease...so why is she saying at the start things about "it may be psychological".. On top of all this I know it is not in my head!!! I am a relatively psychologically sound person, for goodness sake! :? EXCEPT for being told I am not really sick!! Seriously, of course it adds undue stress. Actually, I am a therapist by profession. I am right now on short term disability, I am working on my PhD in grad school, and thank God for that, because it gives me something to do! I know this illness is confusing. And I get very frustrated when my own doctor who treats me for it, puts me on disability, restricts my work hours, sends me for tests, and talks about going on to a "stronger medication to treat the disease" also talks about not being sure if I have a disease!!
Thank you for hearing me vent here. I just need to hear from some others who have been through it. I understand much about the illness. I know one of the reasons I don't "have" the diagnosis is because the blood hasn't shown the definitive "positive" result..despite all my clincial symptoms and debilitation. I did read a book (the name I don't have) recently which states that the diagnostic critrera for lupus changed in 1998 to 4 out of the 11 critrea and it is no longer needed that the blood work be positive it the other criteria are met (b/c sometimes the blood -like ANA can go back to not showing after treatment...and in my cause my doc has been treating me on inflammatory and plaquinil for over a year)...does anyone know what I am talking about here?? Also, my Rhuemy seems to treat me well...I am wondering though if based on my hx and experiences, if I should seek a specialist in lupus. This book states the importance of this..and the way I have been confused by her conflicting statements..I am thinking a consultation with a lupus specialist may be a plus. Right now she has given me the Undifferentiated Connective Tissue Disease dx. I have always been fine with that. But the way I feel now...sort of trapped in bed...in pain and, yes, a little hopeless, I suppose I may be looking for hope elsewhere!
thanks for reading this self purge!!! :lol: