2 doctors 2 different opinions!

i go to my local community health center, better known as the clinic! it's the closest to me since i live in a rural area. i usually see the same doctor but occasionally see another. here's my situation: Dr H. says that you have to have a positive lupus panel for diagnosis. upon seeing him again for the sun illness, he prescribed prednisone and told me it wasn't necessary to be tested again since i had tested last year! that made no sense to me at all. a week after i was off the meds i got sick again, went back to the clinic, seen another doctor. Dr. D says, you got lupus. she tells me that she thinks i was misdiagnosed with lyme disease three years ago, she links lupus to an EBV outbreak i had prior. she put me back on prednisone and asked that i come back in 4 weeks for blood work. well...i had to come back in 4 days because the prednisone was giving me insomnia and this time i saw DR H. [i know this can be confusing!] Dr. H says, NO WAY NO HOW do you have lupus. i feel like he doesn't pay much attention to my medical records, as i have been ill for over four years. he is always saying, it's your anxiety! does anxiety give you blisters and malar rashes when exposed to the sun?? i never heard of such a thing--but maybe i'm living in a cave.

maybe someone here can help me figure out what my next step should be. i know that i should seek a 3rd doctor, even if that means a long drive and costly gas prices! but is there a lupus doctor? it's not that i want lupus but i do want to know what's going on with my body. i'm really fed up with Dr H and how he seems to overlook serious health issues i'm having and brush it off by telling me it's my anxiety! i told him i have anxiety because i don't know what the hecks wrong with my well being!

i don't know much about lupus. do you need a positive blood panel? have any of you heard of this 11 criteria for diagnosis? is Dr D pointing me in the wrong direction as well? i'm so frustrated and confused at this point!

i go for blood work this coming monday and i'm supposed to get a referral to see a rheumatologist.

i know someone here would know most likely more than my doctors. any advice you might offer will be greatly appreciated.

leigh~

thank you sj~* very much. i couldn't find the 11 criteria on the board but did find it listed at the mayo clinic site.
http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis
from that list i'd say i have 6. i didn't realize that the malar rash is separate from the sun related rashes. so much to learn! i also have an uncomfortable occurrence when exposed to the sun and i wonder if anyone else experiences this...i feel like i'm being stabbed! usually in my chest area. i mentioned this to my doctor and he looked at me like i was from another planet and said he never heard of such a thing. it doesn't happen always, usually with the onset of the season, mid spring to summer when i feel this way.

since symptoms mimic a thousand illnesses i am SO confused and really don't know what the heck i have. are there any other illnesses that cause photo sensitivity? along with chronic fatigue, headaches, chest pain, lung pain, arthritis type pain in fingers and feet? i also get this strange blotchy thing going with my skin, it turns white with red outlines, almost looks like a honeycomb. i haven't come across that in my lupus reading...yet anyway.

and you're right sj, the minute clinics are good for sinus infections and that's about it! i'm fed up and almost wishing i lived in the city!! it's funny because the LPN told me she thought i had lupus three years ago!

i suppose i have to start at square one again with the understanding that this isn't any easy diagnosis if it is lupus. from reading the forum, i began to realize that many of you have gone on for years trying to get a diagnosis.

one more thing. has anyone been diagnosed without a positive lupus panel? that was the one thing i wasn't sure about with the second doc i saw, diagnosing me without a positive. she said a lupus patient could go years before testing positive.

now i'm rambling and i'll end it now so that someone else may come along and post!

thank you again sj for responding.

leigh

Greetings Leigh!

I have a diagnosis without the positive ANA. The ANA can go positive and change to negative at any time. Some of us stay negative after beginning treatment because the meds help us. It is very different for everyone. I was sero-negative for ANA but I met eight of the eleven criteria. That was enough for my rhuemy. I had been seeing her for three years before I had a diagnosis and any type of treatment.

A rhuemetologist is the type of doctor you need to see. Many rhuemies do well with diagnosing lupus (also known as SLE - systemic lupus erythmo.... - something I cannot spell tonight) or UCTD (undifferentiated connective tissue disease) or MCTD (mixed connective tissue disease). Even rhuemies can disagree, however, so be sure you are comfortable with your rhuemy. Unfortunately there is a shortage of good thuemies and it is sometimes hard to be picky.

Good luck!

Hi Leigh and welcome. I don't have a lot to add to the great information you have already been given. Hopefully you will get a referral to a great rheumatologist who will help to sort through your symptoms and give you and accurate diagnosis. I agree that it won't do you much good to see Dr. H anymore since he doesn't seem too knowledgeable about lupus and especially about the bloodwork. Most of us have labs done regularly and way more than once a year. I know that being in diagnosis limbo can be really frustrating. Please ask any questions you have - we are here for you. Take care and I'm glad you joined us.

Hi Leigh,

I am new to this forum, but certainly not new to Lupus (SLE).  If I were you I would definitely find a different doctor and fast.  I have had 9 of the symptoms listed in the criteria for Lupus and several of the blood tests indicating Lupus and Sjogrens.  I have been on medications for Lupus now for 14 years.  I literally went for 35 years with Lupus symptoms before it got totally out of hand and nearly killed me before I finally got diagnosed.  Lupus is a serious illness and it is very hard to diagnose.  It can develope insiduously as was the case with me and then boom you get a virus and it can go full blown.  That is what happened to me. I did not have a positive ANA or anything until I got a case of the Chickenpox at the age of 35.  That is when my health went right down hill big time.  I am very lucky to have gotten diagnosed when I did or I most likely would not be here today.  I will be 50 in December.  Good luck and I hope that you find a good Rheumatologist that will listen to you and help you figure out what is happening with you.

Kathy

i want to thank everyone for their responses! i had been offline for a good while taking care of my brother's children. [family emergency] and when i got back on, i tried and tried to respond but the submit button was missing!! i am still battling my way to a proper diagnoses and might have a new doctor soon. new blood work came back normal with an exceptionally high C4a count & normal C3a. now i'm being told that that indicates post lyme disease so i'm more confused than ever. but i did take matters into my own hands and called UMMC here in Maryland and made an appt. to see a rheumatologist, they're supposed to be calling me back with an appt.

Hi Leigh . . . I didn't have anything to add . . . but wanted to welcome you to the forum!!! Blessings!