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Attention Dr. Venuturupalli.
McCadden posted:
I have just joined this newsgroup and introduced myself as Cathy, living in the province of Newfoundland, Canada. My question to you is, why - after waiting a year to see a Rheumatologist here - did his Resident spend an hour with me reviewing my blood tests (all positive for ANA and anti-DNA, etc)and who confirmed that in her opinion I DO have Lupus, but when I saw the Clinical Chief for Rheumatology the same day, he spent less than 5 minutes with me (made no eye contact) and then wrote my GP stating that he could not confirm a diagnosis of LUPUS. I believe this Specialist was angry with me because I phoned the Department of Health to complain about the wait times. Two years later, I am much worse. My GP repeated all blood tests for Lupus recently, an extensive list, and all were again positive....some values worse, a very few (such as sed rate) a little lower. I am to see this Rheumatologist again this month but don't trust him. I am suffering with all the symptoms includindg kidney pain, frequent facial rash, night fevers, dry eyes and mouth, and permanent problems with one ear that started as an infection over a year ago. The fatigue leaves me totally house bound. My GP has treated me on 3 occasions with prednisone for up to 14 days. I received tremendous relief while on prednisone but I understand the dangerous side effects and why my GP is reluctant to prescribe it. What I'd like to know is: I must assume that this Rheumatologist does not like me for the reasons indicated above (I used to be a well-known TV journalist here)....Dr. V...HOW IMPORTANT IS A POSITIVE DIAGNOSIS FROM A RHEUMATOLOGIST? My GP and I have agreed that I do have Lupus and my care is managed accordingly. But the fact is TREATMENT for this disease is very limited. If, when I see this Rheumatologist again this month, what do I say to him? I have new blood tests to show him. If he does agree to finally diagnose me with LUPUS, so what? That won't improve my life in itself. And what do I do about the fact that this man does not like me because I phoned the provincial health department to complain about wait times to see any Rheumatologist, a fact which I believe caused him to dismiss me so he wouldn't have to see me again.

R Swamy Venuturupalli, MD, FACR responded:

I am sorry that you're not feeling well and had an unpleasent visit with the rheumatologist. Having a confirmed diagnosis allows one to come to grips with what is ailing you and take the necessary action to get better. So, you certainly deserve an answer as to what your diagnosis is. In case the rheumatologist does not feel that you have lupus, I think you could ask him what he thinks you have.

Perhaps the rheumatologist is of the opinion that your clinical manifestations are not classic for lupus and you do not meet criteria for lupus. Perhaps, he might feel that you have an undifferentiated connective tissue disease. Or he might be of the opinion that the tests are falsely positive and you do not have an autoimmune disease. In either case, it is reasonable to have him explain to you what he thinks your diagnosis is and what the next steps should be in establishing the diagnosis.

I would suggest approaching the physician specialist with as open a mind as possible. Perhaps he does not realize what a profound impact the five minutes that he spent with you have had on your life and might be more sympathetic if he were made aware of that. Maybe a call from your GP to this doctor might be helpful as it seems like you really need to have a diagnosis and treatement plan established during this visit.

Wishing you the best.

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