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Board Index > Lupus | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


I haven't been posting or even reading these boards very much lately because I've been nothing but increasingly ill! I've been to so many doctors that I just want to throw-up whenever I have to see one now. I have been to 2 top university teaching hospitals rheumys plus another rheumy. I have been to neurologists and the endroconlogist and cardilogist and ear, and opthamologists, nose & throat specialists -- amongst other internists over the last 2 years. One doc says it Fibromyalgia/CFS. Another says it's Sjogren's. Another says it just multiple autoimmune dysfunction problems. My primary care doctor strongly feels it is Sjogren's and possibly Lupus. The top rheumy in the top university teaching hospital when he did a very thorough exam and had 20 vials of blood drawn for tests (had to wait for results of course) gave me 3 folders - Sjogren's, Lupus and Fibro folders. The exam strongly showed autoimmune disease with his remarking that I had malar blush, Raynaud's, oral ulcers, arthralgias, consistent definite postive to very high positver ANA titers, bouts of pleurisy, seizures, and chronic anemia and other autoimmune disorders, Hashimoto's, Interstitial Cystitis, multiple allergies to meds (esp. sulfas), osteoarthritis, frequent sinusitis - can't seen to fight off even a mild allergy flare... severe reaction to insect bites, extremely dry eyes (had dry Schrimer's test and am on Restasis - doesn't work very well so will be getting tear duct plugs)..............YET..... not one of these docs has done any more than shrug their shoulders and attribute EVERYTHING to Fibro/CFS because tho, I have shown very positve ANA titers over several times tested for it.. I have not shown positive for any of the subset of antibodies. So...... no Plaquenil or anything other than muscle relaxers, Neurontin, Lamictal for seizures, and allergy meds. YET.. I am getting more and more ill all the time.... I've lost 27 lbs since Aug. 14th of last year to date. (I am very thin now. I am nauseated all the time, I have been in the ER 3x since Sept. for pleurisy - once overnight due to uncontrolled vomiting. I've told ALL of them... I FEEL LIKE I'M DYING... PCP even says "You're losing weight" and showed concerned face at that and now constant nausea and weakness and dyspnea and momentary blackouts. I have to be extremely careful to guage my essential activities as sometimes I cannot see to drive (blurry vision) and have too much vertigo. Then often when I do get to a store for groceries must have or whatever... I have to turn around and come back home cause my legs start to tremble, things start going black, and I feel as though I'm going to collapse. I am couch bound very often - cannot shower or brush teeth often. So....... I just don't know... what the heck do I do! I live alone. I had to apply for SSDI (Jan. '03 & still waiting for hearing). I lost my home, my social life in addition to my health and I feel as though I'm going to lose my mind sometimes because all these docs have done is to shrug their shoulders despite my pleading with them... I give up! Perhaps they will care to actually have the guts to give a diagnosis when I'm on the autopsy table! ha... ha.. probably not... that might put them in jeopardy of a law-suit by my family members who are now very concerned. I am 50. Before all this, I was a very active, working, pretty healthy person...

Veej ... (I think it's you) I've read where it took you years to finally get a diagnosis and the help you needed. How in the heck did you cope!? I am so tired and I've tried eating right, praying, crying on my friend's shoulders, taking short walks or just sitting on the balcony enjoying nature (I always have and used to hike a lot)... I am on an antidepressant. ha ha.. docs don't seem to have any problem prescribing these to middle aged women!

I want to go to England to this Dr. Hughes.. right now I'm on gov't assitance including food stamps and Medicaid. Maybe if I'm not dead by that the time I get my SSDI (hope! or I'm done for after Aug this year - I won't have any place to live!)... I can take some back pay and go there..

I know I'm complaining. I know this is depressing. I think that many of you do sympathize tho... thus.. doing this... I need some sympathy... =(

Thanks all... by the way... where is Angelic Brat l lately?

hewie





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