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View Full Version : Finally a doctor that listens...but I have another question



supposedlynotsick
01-29-2008, 07:16 PM
I am not sure where to post this so since I am still new I am posting it here. I am so happy because I went to see a rheumy today and it was a female and she was soo good to listen to me. She validated things that I said.
I told her about all of my symptoms and she asked lots of questions. She said as she was looking over my paperwork.."Wait you have had an LA screen (lupus anticoagulant) and it is positive." I said I know but the endocrinologist that did it said that it was probably a false positive because my folic acid was low. This doctor today said she had never heard of that. Has anyone else heard of that?
Also I told her about my rib/cartilage pain but didn't tell her about my sternum. She kept asking me am I sure that I don't have trouble with my heart or lungs. My sternum is not getting better in fact it is getting worse. Not a lot worse just a little every couple of days. Should I call her and tell her about it or just wait until the blood tests come back in two weeks?
She did the tests for lupus and thyroid tests again after asking if I wanted them repeated. She also said I could have Adult Stills or Familial Mediterranean disease. She said they are both rare and have unexplained fever. Thanks for listening and being such a support to me in the short time I have been here!

sick n tired
01-29-2008, 11:22 PM
Hey,

Isn't it great to have a doc who listens! I am so glad for you. About the folic acid thing. I would listen to the rheumy over any other doc when it is about rheumotology (autoimmune). The endocrinologist probably took autoimmune 101 and now considers himself an expert in the field. No, he decided to specialize in the endocrine system.

If the pain is getting worse then by all means call her. She may want you to come in for more tests, but she needs to know about the problem.

I am glad that this was a great day for you in all.

In Him,

Karen

supposedlynotsick
01-30-2008, 12:00 AM
Thanks Karen again for replying to my post.
I should specify that the pain in my sternum is not like a big pain. It is more like a nagging just a little over enough to let me know it is there pain. It does get worse if I turn the wrong way.
She said since my red blood cells and hematocrite and hemaglobin were high she was concerned about my lungs and heart. That was why she kept asking me about it.
Thanks again! I love this board that you really can ask anything and someone will answer you.
My wish is for others to get a good doctor like I have now. It's taken me three years to get here but finally I am here! (maybe) I always stay cautiously optimistic where a diagnosis is concerned.

Saysusie
01-31-2008, 12:06 PM
It might be beneficial for you to tell her about the pain in your sternum, even though it is just a nagging pain. It is better that she know, that she and you determine if it is or is not an issue with your lungs so that it can be treated and not get any worse.

With reference to the lupus anticoagulant test:
The lupus anticoagulant is an IgM or IgG immunoglobulin that produces a prolonged PTT by binding to the phospholipid used in the in vitro PTT assay. The "lupus anticoagulant" is seen in 510% of patients with systemic lupus erythematosus. The Lupus anticoagulant testing is used to help determine the cause of an unexplained thrombosis, recurrent fetal loss, or a prolonged PTT test (Partial thromboplastin time (PTT) is a blood test that measures the time it takes your blood to clot. A PTT test can be used to check for bleeding problems). It is ordered to help determine whether a prolonged PTT is due to a specific inhibitor (an antibody against a specific coagulation factor) or to a nonspecific inhibitor like the lupus anticoagulant.
The test may be ordered along with anticardiolipin antibody and the anti-beta2-glycoprotein I assay to check for antiphospholipid syndrome. If you test positive for the lupus anticoagulant, the test may be done again in several weeks to see if the antibody was transient. If a lupus anticoagulant panel is positive, your doctor may want to repeat one or more of the tests several weeks later to determine whether the lupus inhibitor is transitory or chronic. The results of each of the lupus anticoagulant tests either lead towards or away from the likelihood of having a lupus anticoagulant.
Patients on anticoagulant therapy -heparin or heparin substitute (such as hirudin, danaparoid, or argatroban) may have false positive results for lupus anticoagulant, but those on warfarin (coumadin) anticoagulant therapy should not.
In addition to testing for lupus anticoagulant, it may sometimes be necessary to test for coagulation factor VIII levels. Coagulation factor VIII inhibitors (specific antibodies against factor VIII) can decrease factor VIII levels and cause false positive lupus anticoagulant tests. Elevated factor VIII levels, as may be seen in an acute infection or with replacement therapy when someone has Hemophilia A, may shorten the PTT time, leading to a temporary false negative test for lupus anticoagulant.

The doctor may also want to test for the lupus anticoagulant when a patient has a positive anticardiolipin antibody, to evaluate whether ther person has antiphospholipid syndrome.

If someone is negative for the lupus anticoagulant but has an autoimmune disease, such as SLE or a mixed connective tissue disorder, the affected patient's doctor may occasionally order one or more of the lupus anticoagulant screening tests, usually the PTT, to determine whether the antibody has developed since the last time the test was performed. This is done because the person has the potential to develop the lupus anticoagulant at any time.

I've searched and searched and could find nothing reliable about low folic acid providing a false positive for lupus anticoagulant. I've read much about folic acid being recommended for women who are pregnant and have positive lupus anticoagulant. So, like your new doctor, I'm stumped on the other doctor's opinion.

I hope that this has been helpful, let me know if you need anything further.

Peace and Blessings
Saysusie

ethanandrew
02-02-2008, 03:53 AM
hi

i know what the nagging rib pain is all about. I have had it since i was diagniosed in july and it has never went away. I see a lupus specialist she told me the this is part of lupus. I also have auto immune hepititis. my body attacked my liver. I had my heart checked and it was ok good luck with your pain and take care

ethanandrew

supposedlynotsick
02-02-2008, 02:55 PM
Thanks Saysusie! I am glad you responded. Thanks for searching for the folic acid thing. Evidently he doesn't know what he is talking about with that anyway.
This was very helpful but you said let you know if I need anything further. The dermatologist put me on steroids for a rash on my back and the rheumy said to take them and see if they make me feel better and that they should make my fevers less frequent. The derm usually prescribes prednisone, which I have taken before, and it gave me ample energy. I am taking this one that is called decadron. It is the generic of it too. I usually have trouble with the generic drugs anyway.
I guess you should also know that I went to my PCP yesterday with my first case of cystitis. I have has chronic UTI's for about 2 years now but never cystitis. I am taking uroblue too so that might be making me tired. I just wonder if I should ask the dr to give me prednisone instead and see if it makes me feel any better?
Thanks again!

supposedlynotsick
02-02-2008, 03:26 PM
Thanks Ethanandrew. I hope your pain gets better or at least gets to be tolerable.
When I saw my PCP yesterday she listenened to my chest and said that everything sounded good, so I think that was good news. This was after I told her about my rib and sternum pain.
Thanks again everyone. This board is so helpful!