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elisabethm
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Iwas at my gp yesterday and he had a letter from my rhumy telling him that he had seen me in feb he told him that he was not sure if it was sle but my blood works were not ok he said he would have a look at them again.So my question to my own doctor if he is not sure then why has he still got me on the palquin doc said i have a diseise but he is not sure what it is.That does not answer any of my questions do i have sle or not my own doctor would go with the first rhumy not the second i tend to go with my own doctor as i see him at least once a month i know he is not a rhumy but he spent more time with me than the rhumy so who do you beleive does any one else go with there doctors advice elisabeth
 

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Hi Elisabeth,

I know it is frustrating, but this kind of thing is pretty common early in the diagnostic proceedure.

If a doctor is sure enough to start prescribing treatment, then they are pretty sure about their diagnosis. If you need for your own peace of mind to have certainty, then believe you have a firm diagnosis.

I'm not sure who is who re 1st and 2nd rheumy's etc - you trust and like one doc, and not the other? Which one has prescribled plaquenil for you?

Try to see the current situation as a good thing. You have the right medication and the right specialist and are being watched. But you don't have the unchangeable and potentially damaging (in terms of insurance and job prospects) label of lupus. If you haven't thought about these things, then now is the time to act before the diagnosis becomes fixed and in writing.

I understand that this is all very frustrating and confusing at the moment, but if you inform yourself well, keep communicating with your doctor and deveop a trusting relationship, it will be ok, and in a while it will all seem much less traumatic. At least, that is how it has been for me. The first few years of prediagnosis and new dianosis were tough psychologically, but now it is easier.

I hope it gets better for you too.

X C X
 

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The best way to explain it, is that the doctors are pretty sure that "something autoimmune" is the right diagnosis, but do not feel like they can or should say which specific one is absolutely correct. Then the right thing to do is to prescribe the appropriate medication (Plaquenil) and take a wait and see approach to determine if one diagnosis emerges as "the one".

For now, you can probably consider yourself as being diagnosed with UCTD = Undifferentiated Connective Tissue Disease which has many symptoms of lupus but usually not any organ damage and lacking the specific antibodies of lupus like dsDNA or Smith. Giving out a lupus diagnosis is a pretty serious thing in terms of life insurance and health insurance; basically you won't be able to get them unless through employment where they can't turn you down. This is the reason many doctors prefer to label patients with UCTD instead of lupus. Although it sounds like you weren't told this was your diagnosis either but you can ask about it at your next appointment.
 

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Hi there, it looks like you are being watched pretty good. You have a Rheumy, You are already on Plaquinel, which is very important.
All in all, I would say that you are being taken seriously, are on the right med, and are on the right track. Keep your appts, and Keep a
list of symptoms to give to your dr.. Keep us posted.
 
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