i was diagnosed with tb recently and ona ntibiotics. however had rheumatological and neuro symptons for almost two years now. i went to see aneurologist recently a professor he is a specialist in chronic fatigue syndrome i kept getting told i had that he thinks i have lupus possibly again.
i have temporal lobe epilepsy, arthritis in my spine, asthma high allergy, burning rashes and blisyers allergic rhinisitus. recently my doctoe has found me to have inflammtion od the ear canals. i am deficient in b12 iron folate and vitimain d. i have ben told i have livido reticularlis and a previuos superficail clot in my leg. the doctor looked at my hands and told me i had raynards. my ana and ds dna have always been negative. i have tried three differnt epileptical drugs. carbamazipine was the only one i could tolerate. but cant take it cause of tb meds. i took epilem tonight and had to give meyself steriods my ears feel like they are bursting. i ended up in a phychiatric hospital due to the pressure of all this and im not scitzophrenic bi polar or phychotic although i believe i may have suffered phychosis.
i have to wait three weeks to see the neuro again. when he saw me he was testing my memory and could tell i wasn't right he wrote to my doctor to have a go at them . not sure where to go from here too much going wrong. dont even know how im getting around.
That is a heavy load to carry . Hopefully is the Dr. suspects Lupus he will order a full blood work up for anti bodies, not just ana and dsdna. I hope the Doctor is able to sort all of this out and give you effective treatment soon.
Zoe, Hi. I'm sorry to read your update, meaning that you're back on that merry-go-round. Let us know how things are going for you, when you can. Meanwhile, I just wanted to send you my best wishes & let you know that you're in my thoughts. Always, Vee
Erfan, I found out the hard way that there are "subsets" of lupus in which ANA can be negative. I have SCLE = subacute cutaneous LE, in which 30% or so are ANA-negative. I think in the past this was called "Ro-lupus", but in the late 1970's, it was given its own descriptive name. But I'd say the name is misleading, as it can go full-blown systemic. 50% of those with SCLE score 4 or more on the "4 of 11" SLE criteria, although the group tends to have less kidney & CNS involvement, or so it's thought...
And in DLE (discoid lupus), 1/2 are ANA-negative. About 10% of people who have discoid (scarring) lesions go on to systemic lupus.
It took my going to a teaching hospital rheumie to get answers. I also had one final skin biopsy done by a dermatopathologist. There are two SCLE-specific rashes: annular (targetlike) & psoriasiform (resembles psoriasis, to the naked eye, but isn't). I had the annular (circular) form. Like most people with SCLE, the antibody that finally showed as positive was anti-Ro.
Bottom line? Being ANA-negative is not proof you don't have lupus, unless, of course, the doctors telling you this REALLY REALLY understand the "subsets". Best wishes, Vee
Last edited by VeeJ; 11-10-2007 at 04:01 AM.