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HELP!! How to get my PCP to listen?
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Fesser98Sp posted:
I am a 31yo female and I think I may have lupus. My only problem is that my doctor will not listen to me. I am on my third one. I have been having symptoms off and on for about five years. I break out after sun exposure, and can at random become very fatigued. I wake up with multiple joint(feet, hands elbows, shoulders) and muscle pain in the mornings sometimes daily for one to three months(usually when under stress) that at times is so bad that I can barely stand to cross the room and shut off the alarm. The pain decreases with movement. I can get severe migraines(which I have found respond best to IV Tordadol, a NSAID) usually near my menstral cycle, along with an increased presence of my other symptoms. I have an aunt who has lupus, as well as I commonly have casts and protein in my urine. I have spent lots of time doing my homework and researching lupus, and they just keep blowing me off. They won't even discuss an ANA let alone a Lupus A-A test or a referral to a rheumatologist. I am a single parent and don't want to wait until I am seriously ill to get diagnosed. SO how do I get my doctor to listen?Any advice would be helpful. Thanks!!
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lisaisweavebee responded:
Hi Fesser,

Welcome to the board!

If I were in your shoes, I would make a list of my symptoms - it's important to keep it short and sweet - like "widespread joint pain", "fatigue", "sun sensitivity".... and hand it to him and point blank tell him you are concerned you may have lupus and ask him if he feels if it is a possibility? If he says "no" then ask him what he's basing his opinion on and if he feels it's not lupus, than what the heck is it??

Keeping it short and to the point helps the physician zero in on your symptoms and maybe will help you gets some answers.

Good luck and keep us posted!

Lisa
 
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squirmy1963 replied to lisaisweavebee's response:
great advice, I would like to add, that after my pcp said Anemia and "sedentary lifestyle" were my only problems. I knew to call a Rheumy because my mom has Lupus. I found one that accepted patients without a referral and was diagnosed within a couple days. I feel my Rheumy literally saved my life, I told her so. After five years of treatment, I feel well most of the time.
 
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Fesser98Sp replied to squirmy1963's response:
Ok so I thought I would drop a line to give an update. I fired my PCP and replaced him with an NP she is fabulous I saw her this past week and she immediately wrote for lab work. I had it all draw now I'm waiting for results. They said it will take ten days to get the blood work back. She wants to be thorough, because all the basic labs they have drawn in the past are fairly normal. So no one would believe me when I said I was sick. They are running a RF, ESR, Vit D level, ANA, and Lyme titer. So hopefully I'll get some answers.
 
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lisaisweavebee replied to Fesser98Sp's response:
Yay! I'm glad you found someone you can talk to and trust! Maybe now you will be able to get some answers. Keep me posted!

Lisa
 
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Fesser98Sp replied to lisaisweavebee's response:
So the lab work came back...they called and said that my Vitamin D was low but everything else was fine. I am getting a little frustrated. I just have that funny feeling that it more than that, ya know? If it was a low Vitamin D I would hurt all the time not just in the morning. I have had these off and on for about 5 years, even in the summer. And I don't have muscle weakness, it just seems like an easy answer. I'm just a bit distrustful of them because they don't want to tell me my lab values,and they tell me things are normal. But my UA is always abnormal(protein and casts), and the last one they did, all they said was that it is normal. Do they mean my normal or everyone else's normal? Why are they keeping my lab values from me, I know my numbers better than they do. I am going to notice if something is off. So I guess I will take the Vitamin D supplements and see what happens.
 
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HG1948 replied to Fesser98Sp's response:
Fesser,

By law, you have access to copies of your medical records. Most physician's offices and facilities do charge a fee if they most make more than one or two copies of a patient's medical records. If you are present in the location where they have your records, simply request them, fill out any necessary form(s), provide identification, pay the fee, and they will prepare your copies while you wait, or mail they to you (some facilities no longer mail medical records.)

(I think it is a good idea to keep copies of all your lab reports, doctor's reports, therapist reports, E.R and Hospital admission and discharge summaries, and radiology or doppler testing records anyway. Some facilities destroy medical records after 7-10 years. If you are wanting to document a "History" of treatment or testing for a disorder, this could be very important to you in the future.)

Most doctor's offices and clinics will only tell you things like "Everything is o.k., except your (fill in the blank), and Dr. (fill in the blank) wants you to (fill in the blank) about that."

With regard to your question about what is normal? Laboratory test have numerical values, though some test have either a "positive" or "negative" value against which your individual test score is compared.

Your doctor or the nurse practitioner are the people qualified to interpret what your individual score means. The person reporting that your scores are normal, might not even know what individual test means. Occasionally the scores from several test may be combined together to form a seperate score that has a meaning of all of its own.

I can tell you are very discouraged. Hey, don't throw in the towel just, yet! It also sounded like you had hoped that you'd finally have the "answer" to your problem, if you could only get the correct lab testing done. Unfortunately, there is no lab test for lupus! Lupus is diagnosed using 11 criteria, and a patient needs to have met 4 of these to be diagnosed with lupus. These criteria do not all have to be present at the same time. A test for ANA (anti-necular antibody) is only one indicater that a patient might have an autoimmune disorder. Lupus is just one of 100 . (The outcome of an ANA test sometimes means very little. My own last ANA score was negative 2 weeks ago. Nevertheless, I am currently struggling with a lupus flare that is now attacking my kidneys, I have a rash all over my torso, and my rheumatologist told me herself that I "... Wasn't doing good at all! See what I mean?")

Because, lab test levels change, doctor's reorder test and look at measurements across the passage of time to help them make a diagnosis, as well repeat physical examinations, and checking for symptoms.

If you've read this message board for several months, you will see that it is very, very rare for a person to be diagnosed with lupus after just one or two rounds of medical testing...Just hang in there and don't give up. Stay here with us, ask questions when you want, or offer to help someone else. We call ourself the "wolfpack" because lupus is the latin word for wolf.

Good luck to you.

HG
 
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HG1948 replied to HG1948's response:
Fesser,
I forgot to give you this link. It is to the Lupus Foundation of America's website. These are the criteria and symptoms they recommend be used in diagnosing lupus, there are several others:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2241&zoneid=524

HG


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