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they are thinking lupus again

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Old 10-31-2007, 12:52 PM   #1
Join Date: Apr 2007
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zoe111 HB User
they are thinking lupus again

hello all,

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.

Zoe x

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Old 11-01-2007, 06:50 AM   #2
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realisticchic HB User
Re: they are thinking lupus again

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.

Old 11-01-2007, 08:02 AM   #3
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Re: they are thinking lupus again

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

Old 11-09-2007, 11:08 PM   #4
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erfan HB User
Re: they are thinking lupus again

Correct me if I'm wrong, but I thought a neg ANA rules out Lupus?

I just got blood test back today and was rx with psoriatic arthritis because of neg ana....sed was 28 and CRP 1.75


Old 11-10-2007, 04:00 AM   #5
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Re: they are thinking lupus again

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. Reason: spelling

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