tired of wondering do i have it or do i not?
hi. new here. my husband thought it would be a good idea for me to talk to people who could understand what i am going through. i am having a difficult time believing whether or not i actually have lupus because my doctors have me questioning myself. in 1999 i had a sudden onset of double vision and went to eye doctor thinking it was glasses i needed. they told me i had optic neuritis in both eyes and i should be checked out by a doctor. after being tested for MS, diabetes, pseudotumor cerebri, etc and no one coming up with anything, i got frustrated and called a friend who i worked with who is a doctor and told him my frustrations. he took a thorough history and ran some bloodwork. my sed rate was 47 and i had a borderline speckled ana and was slightly anemic. he decided to diagnose me with mctd until further symptoms showed themselves. after that i had an episode of going completely blind. i forgot to tell you that my history includes fast heart rate,chest pain,unexplained raised red rashed on arms and legs and fatigue since teenager, most symptoms went away when i had my children from 1985 to 1990, they began to re-appear noticeably in 1995 and it has gone down hill from there. current symptoms are malar rash that sometimes comes and goes in a matter of hours, extreme fatigue, joint pain, high blood pressure, elvated blood glucose from steroids and possibly because i am very overweight, severe headaches, microalbuminuria in 2001, and now i am anemic and have more protein in my urine than before which was discovered this past week while i was admitted to hospital for severe headache and vomiting. protein was 198mg in 24 hr urine. md told me i probably had vasculitis and possibly lupus nephritis from flare. here is the problem. my ana and all autoimmune blood tests are negative. i have ever only had just the one borderline speckled ana and a few eleveted sed rated. i have not found a rheumy that does not make me feel like i am crazy yet please help i know this is long. any help would be appreciated
Thanks for the Encouragement
Thanks for the reply. When I did my post last night I had the fatigue monster sitting on me and brain fog like you would not believe, so I did not make a few things clear. My dr friend moved to Kissimmee and I no longer see him. He did start me on meds without a firm diagnosis, but since he left, the doctors I have encountered have been less than helpful. My PMD is wonderful(another friend I once worked with), but he is afraid to do anything without a specialist's ok. There is one Rheumy in town and he is a JERK. He once told me after I had been seeing him for about a year and I asked to get off Arava because of the side effects, that I had to do what he said and he would not give me anything else or tell me how to wean myself off the Arava. That was the last time I saw him. I have seen Dr. Zeb in Tallahassee and Dr. Fessler at UAB. Both of which told me I have Fibromyalgia. When I asked them why prednisone made my symptoms so much better(because if it were fibro, prednisone would make it worse) they could not answer. Currently I am seeing Diane Harris out of Pensacola, but have not seen her in about a year. When I began seeing her she ran all the usual tests and of course they were all "normal". She did continue the meds I was on and said she wanted to change my diagnosis to Undifferentiated Connective Tissue Disease. She did not really act like she thought I was crazy, but she wasn't willing to commit to a firm SLE diagnosis either. I thought, here we go again and I did my usual thing and decided to pretend I didn't have Lupus for the last year. I have been taking my meds, just not really seeking that all important diagnosis to validate that I am not crazy. God gave me a reality check with the hospitalization last week with the ultimate diagnosis being SLE CNS Vasculitis and Possible Lupus Nephritis. This got me back on the wagon to seek someone who will be sensitive to my needs and not treat me like I am a basket case. You asked about meds. Currently I am taking the following meds:Toprol XL 75mg, Prednisone 20mg daily, Methotrexate 17.5mg SQ Weekly, Mobic 15mg daily,Singulair 10mg Daily, Lasix 20mg daily,Folic Acid 1.6mg daily, Calcium 1800mg daily, Potassium 20mEq daily, Wellbutrin 200mg XR daily, Advair twice a day, Combivent twicw a day and flonase twice a day. Enough to kill a horse. My main concern right now is this protein in my urine, anemia and low serum protein. I really hope this has not moved to my kidneys. I am trying to get in with my Nephrologist, but there is only one group in town and they have a monopoly on things so it's their way or no way and I am still waiting to get an appointment. Sorry this is so long. I have always tried to handle this on my own, but really am getting overwhelmed and need some support. Thanks for your help!