View Full Version : Bad doctor appt...long and venting!
05-17-2007, 03:03 PM
I had a bad appointment today and need some advice. I love my doctor, but now I am confused. He is an Internist and is the 2nd doctor to say, even though I tested negative for Lupus or a Connective Tissue disorder, that it has to be Lupus. Now he is wondering if it is the right diagnosis. First he said the Lupus diagnosis was mainly due to sun sensitivity, fevers, blood in my urine and also all the common flu like aches and pains. He mentioned some people don't test positive for years. He and 2 doctors said no way is it Fibromyalgia because of the symptoms I just mentioned and I don't hurt in the right places. I had more blood work (still negative) and when I first started Imuran I felt a little better. Then he doubled it and I don't feel any better and developed new symptoms. I get sore throats, fever if I do too much, my scalp even hurts! I ache, it takes me 2 hours to get going because I ache so bad in the morning and I am stiff. My body cracks all over when I move. I have an upset stomach and nausea. I am getting so fat from laying around! Since my vision had gotten weird he is sending me to an eye doctor and I developed chest pain so he is sending me to have my galbladder checked. When I fell one of the times I twisted my ankle and it won't heal and keeps swelling so he thinks I fractured it so he wants x-rays. If it was fractured then what? He sent me to have my white count checked again too. He has no input on my memory issues. Now he is talking fibromyalgia again and says my back is so tight. This from the same guy who said before no way is it fibromyalgia. I don't know what to do. Should I ask my GP for a Rheumy? Should I ask this doctor for different meds? Am I crazy? In January he seemed so sure of himself! I just want to feel better! Grrrrrrrr! :crazyeyes:
05-17-2007, 03:12 PM
yes i think you should ask for a rheumy,
at the top of the page there is a search button, do a search on "negative ana" there are many posts there that might be able to help,
it is my understanding that lupus is possible even with negative ana
05-17-2007, 04:00 PM
If I were you I'd run to the best Rheumatologist I could find.
A GP can only do so much, because his training is limited to his specialty (General Family Practice Medicine). A Rheumatologist is specially trained to deal with autoimmune/inflammatory disorders.
A GOOD GP would send you without having you ask first, in my opinion...
I mean, I'm glad he's nice and all... but...
P.S. You can have a negative ANA and still have MCTD/Lupus... When I was first diagnosed, I had a positive specked pattern ANA. It stayed positive for years, and every once in a blue moon mine still comes back within quasai normal range. So who knows? My rheumatologist believes that it can come back normal when it's remissing, but when it's flaring, it's up.
05-18-2007, 05:51 AM
to Tammyr, good mornin,
just a couple of suggestions or notes to maybe help you understand:
most of the medications used for lupus or high blood pressure cause some type of sore throat
i experienced problems with my eyes, it turned out to be dry eyes- cured with eye drops but exaburated by meds
i think some of these doctors run up against a wall when confronted by lupus, they have an overwhelming need to cure and this disease frustrates them also, so they revert to what they know which is clinical DX
05-18-2007, 06:07 AM
Tammy, it sounds like a rheumatologist would be very best option at this point. If your primary care doctor is an internist, that means he is a specialist in internal medicine. An internist has more advanced training than a family practice doctor or a general practioner. A rheumatologist is a subspecialist, meaning he has additional specialized training in one specific area - in this case. arthritic and rheumatic diseases. Rheumatologists are usually the best qualified to evaluate possible lupus. Some immunologists also deal with lupus patients, but many of them have a hospital practice only, so it can be harder to find one. It's important to make sure that any rheumatologist you see is a board-certified specialist.
It is possible to have ANA-negative lupus, but with the very sensitive test methods available now, it is increasingly rare. About 3% of people with lupus will be ANA-negative, but they are often positive for other auto-antibodies, and may have other abnormal lab tests. Lupus can look a lot like other diseases, such as lyme disease, or chronic fatigue immune deficiency syndrome, so you may need tests to rule out other conditions that could mimic lupus. If your doctor is only ordering an ANA screen, and not specifically requesting any of the specialized antibody tests, then you could be positive for other antibodies that would not be detected in a normal ANA test. So a rheumatologist might be able to do a more complete workup, and hopefully figure out exactly what is going on.
05-28-2007, 06:45 PM
Thanks for all the advice. I am pretty sure I only had regular ANA screen and the sed rate checked. I was tested for Lyme and it was negative. I still have a GP although the Internist wants me to make him the primary care doc due to insurance reasons. Right now he says he won't change meds until my galbladder checks out. I am so tired right now. I think once I get that checked out I'll ask for a referral to a Rheumy. You guys are great!
05-30-2007, 02:49 PM
I am so sorry to hear about all of this... You must be so confused and frustrated with doctors changing their minds all the time! :x
I think that going to see a Rheumatologist would be a good idea.
Do you have dry eyes and mouth at all? I have Chronic Pharyngitis due to Sjogren's Syndrome. Also, sleeping with your mouth open can cause a sore throat.
Keep well and feel better! :)
06-03-2007, 07:52 AM
IloveHistory, I do have dry eyes and mouth. I am supposed to be getting referred to an Opthamalogist to get my eyes and declining vision checked out. Since I did not make my Internist my primary care doctor they called to tell me that I have to go thru the primary for the referral. They should have known this already! Anyway, I just got back from a trip and have to call and straighten it out Monday. I do go Wedenesday to have the galbladder and sore ankle checked. When I call the primary doctor I will probably tell them I need the referral to the Rheumy AND the eye doctor. This way I can get yet another opinion. Thanks to all who have answered my questions!
06-05-2007, 01:48 PM
Let us know how your appointments go and when they are!
I will pray that they go well!
Keep well! :)
06-05-2007, 02:26 PM
there's your verdict. off to see the rheumatologist! :P
so sorry for the frustration. let us know what happens ok?
be well :wink:
06-26-2007, 04:26 PM
Now I need my gallbladder removed! I was having pain so they did a sono and it is full of stones. Now the wait for insurance to approve. Tomorrow is another MRI. This time on my leg. Something popped in my calf when I was in a hurry down the stairs. Lupus is bad enough! At least these problems can be fixed.
06-26-2007, 05:22 PM
With blood in your urine and bad eye sight I would think about going to a nephrologist. I had the same problems and had my pcp send me to one and that is how they found my lupus. I had to have a kidney biopsyand my blood work was all negative, but the biopsy showed lupus. But go to a rheum doc. After my kdiney biopsy it took 3 1/2 years for it to show up in my blood work and i was having tests done twice a month so don't wait. Tell your doc you want all the options, all the tests.
06-26-2007, 08:28 PM
I would HIGHLY recommend that you seek out the best rheumatologist that you can find. I don't know where you live or if you are near a "teaching hospital" (University, etc.); I would say normally, if you are located in a city that has a medical hospital associated with the University; they usually have the most current testing diagnostics; teachers from around the globe...so I would recommend that you see a rheumatolgist WITH A LOT OF HISTORY of working with lupus.
Approximately three years ago I started getting headaches, and then a lot of colds/flu symptoms; double vision, joint tenderness....I swear I know exactly all the symptoms you've described. Lupus is such a complex and very complicated disease to diagnose/treat and maintain. No two patients are alike and no two people suffer in the same way. I would like to encourage you to keep a journal and at the end of the day; just jot down notes about your day, how you were feelin', taking meds, anything unusual happen, etc. I mention it because; my memory started to deteriorate and I swear I was losing my mind; however I found it that the "brain fog" is a neurological symptom of SLE.
I can only share with you my successes during this long developing journey (mostly learned by trial and error, because I never knew about this site before). Because I have so many different areas of my body affected by the lupus; I am currently seeing the following doctors: not necessarily by choice....but more by necessity now. Because lupus can develop in one or more organs in the body, it's difficult for one doctor to be so involved in ALL the aspects of how lupus deteriorates that particular organ....and the specialists really have more time to dedicate to you, especially when you're new and needing to ask alot of questions.
I am seeing a neurologist for (double vision, eye problems); a nephrologist (kidneys)...this is crucial if you have had a renal biopsy; cardiologist (lupus pericarditis)....so you see; it's not just a one doctor type of problem. Some people may not be advanced enough to need more doctors....just don't settle for anything....THIS IS YOUR LIFE, YOUR BODY, YOUR RIGHT to seek out the best possible care you can find for yourself.
It's a hard task trying to navigate through these times when you've never had to do it before....and thank goodness you will find so many wonderful and wise people here who are willing to help you through whatever stage you are in. Sometimes the diagnosis can be a long, long, long time coming.
Hang in there; please know that you are not alone. Chime in any time.
We're so glad that you're here!! Keep us posted and let us know how you're doing.
06-30-2007, 12:08 PM
I'm SO sorry to hear that you are having such a difficult time, health-wise, but please know that you are in my thoughts and prayers...
Feel better soon!