View Full Version : Hi, I'm P.Jay
I found this forum when I was looking for a lupus support group.
Although I have not been officially diagnosed, I have suspected lupus for 10 years now. In 2002, after a severe health crisis I told my doctor that I suspected lupus; his answer to me "I don't think you have lupus." That's it, end of discussion.
But I'm stubborn and regularly monitor my health, so I have another doc appointment tomorrow (different doctor) and I'm preparing myself to again bring up lupus. Now, I'm more prepared, with the list of symptoms, of which I exhibit malar rash, discoid rash, photosensitivity, oral ulcers and arthritis. And also with an understanding of what tests need to be done and what the results of those tests will mean.
I also now know that I should ask for a referral to a rheumatologist, because that's the kind of doctor who should be able to help me the most. It's not that I'm looking for a lupus diagnosis, I want to know what's wrong with me; And so far, with the given set of symptoms and complaints, lupus is the only thing that brings it all together to make sense.
Anyway, that's me.
04-16-2007, 12:17 PM
Hi, Pjay, and welcome. It sounds like you are very well prepared for your doctor's appointment and know what to ask. I hope your doctor is receptive and you are finally able to get some answers. Ten years is a long time to be in limbo. Please keep us posted on how things go.
04-17-2007, 09:06 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Wow! Ten years is such a long time... I sincerely hope that you get some answers soon. Good luck with your doctor's appointment tomorrow!
Keep well! :)
Thank you both for welcoming me. It is nice to finally have a forum where I can discuss lupus and all the health concerns that revolve around it, without feeling like I'm a hypochondriac, because you all are going through the same kinds of things as I am. Sharing that experience and learning through that process is one of the "big" benefits, to me, with this forum. So again, thank you marycain and IloveHistory, for the welcome.
My doc appointment today went fairly well. Talk about it later, gotta run.
04-18-2007, 10:50 AM
I see you had to run before telling us how your doctor's appointment went. When you have time, please let us know if you got your referral to a rheumatologist and if this new doctor took you and your symptoms seriously.
Also, let me welcome you to our family. I realize that my welcome is a bit late :lol: But, welcome anyway!!
Peace and Blessings
Thanks for the welcome saysusie. :-)
So the doc appointment went fairly well, although I did NOT get the referral to the rheumy doc. But what my almost-doc (resident) did do was order the tests for lupus. So that is a step in the right direction.
I'm supposed to go back to see him in 4 to 6 weeks, I would guess to go over the test results.
That's it for now.
04-19-2007, 08:07 PM
I have been living with lupis for around 10 years but have not yet been "officially" diagnosed. My immunologist told me his is 98% positive that I have it as I have many lupis symptoms and have been tested for everything else under the sun with negative results. My GP though isn't so sure - although he seems to change his mind regularly!! Very frustrating. My ANA is sky high but there is no other indicator in my blood. He says I definately have an auto-immune disease, he's just not sure which one.
I know how you feel when you say you're not looking for a lupis diagnosis, but you just want to know what's wrong. I'd been living with lupis for around 9 years before my GP told me he didn't think it was - I didn't think it would affect me, but it did. I want to KNOW what's wrong with me so that I can care for myself accordingling. Having an unknown disease is very unsettling.
In the end I decided to listen to my immunologist. As I said, I have many symptoms and everybody on this forum feels the same way I do. I gotta say though that I am one of the lucky ones - my symptoms are not nearly as severe as many of my friends in here.
Anyway, don't get too hung up on the tests. If they come back negative it doesn't necessarily mean that you dont have an auto-immune disease, it may just be hiding!! But you can still treat youself for the symptoms you have and this forum should be able to help you find the answers to your questions.
And you're not a hypochondriac!!!!!
Thanks for the feedback, wombat. :-)
Actually, you hit the nail right on the head, the only reason for wanting to know what is wrong with me, is so that I know how to proceed in terms of taking care of myself and my health.
But really, no matter what the test results, it's sort of besides-the-point anyway; I've been implementing holisitic solutions for the different health issues for awhile now and I plan to continue with the holistic approach as it has yielded positive results so far. In other words, I've been able to improve my quality of life since I've been using a holistic approach.
But that's not to say that if my health began to decline rapidly, that I wouldn't take medication; I'm not saying that at all. I would just rather avoid drugs as much as possible.
Thanks again wombat.
04-22-2007, 04:07 AM
Since often the diagnosis of lupus is used more for research purposes than treatment, it's almost a added 'bonus' and not necessary. However, some docs seem reluctant to provide some kinds of treatment for the disease without an official diagnosis, which can take years. Frustrating. My rheumatologist was 99% certain of SLE so began treating me accordingly, calling it 'connective tissue disease'. It took a trip to Mayo Clinic for the official diagnosis (4 or 5 of the 11 criteria) and more unfolding all the time. However, when they read my medical chart going back many years, they said I've probably had some kind of autoimmune disease for much of my adult life. I just KNEW there was something wrong, but if you don't know what questions to ask, and your doctor doesn't know what to look for, you'd just in the dark. I'm glad you've taken an active role in your own care Pjay. You'll be all the better for it. Keep us posted on how you progress, and wel come to our "Family!"
Thanks for the welcome.
Yes, my doctor's have been reluctant, not to provide treatment as you mention below, but to even consider the possibility of lupus and therefore order testing. That has been a source of frustration for me for years now.
But I've come to the point that taking responsibility for my own health is more important than having an official diagnosis. Because the way I look at it, when ANYTHING negatively effects the quality of my life, I will seek to stop it. I recognize that a support group for any health issue can be very helpful and that is what this forum is for me. So thanks again.