RichGotsPots Posted February 29, 2012 Report Share Posted February 29, 2012 Went to a Rheum doc today, traveled an hour and they said there isn't any autoimmune things they test for, that a neurologist would test for all of them. What a waste!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 29, 2012 Report Share Posted February 29, 2012 Wow, RIch. Sorry to hear that! It's a really surprising response and I can understand your disppointment. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 29, 2012 Report Share Posted February 29, 2012 I thought rheumatologist did test for autoimmune stuff!? So sorry it was a waste of your time. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 29, 2012 Report Share Posted February 29, 2012 My rheumy told me they can only test me for common autoimmune stuff. They will not test for pots antibodies, which I'm assuming is what you were looking for. You would have to go to a really specialized pots place for that, like mayo or vandy Quote Link to comment Share on other sites More sharing options...
issie Posted March 1, 2012 Report Share Posted March 1, 2012 It's hard to get any of the docs to do the testing for auto-immune type stuff. I went to an allergist/immunologist that did allot of my testing. But, even with what was uncovered - nothing was done about the results. So, almost feel like allergy testing is a waste of money. It's also, not an accurate or reliable test - it has about 10% failure rate. Some of the things, I'm deathly allergic to, didn't show positive. But, allergy and immunology are two seperate issues. But, since he did testing on both - just thought I'd throw that out there.The auto-antibodies test is a Mayo exclusive test. I think it can be drawn and sent to them - if you can find a doc to do it.Sorry, it didn't turn out well for you. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 1, 2012 Report Share Posted March 1, 2012 My internist did my Myasthenia Gravis test, acetylcholine receptor antibodies at my request. It really depends on the doctor. She also checked my blood chemistries, and for vitamin B deficiency. My neurologist this time, tested for tumors, aneurysms, MS and Lymes and other autoimmune diseases. Years ago, I had a rheumatologist who did several autoimmunity tests, too. I have many allergies, used to have an allergist, had desensitization (allergy shots for 4 years), but now my internist also takes care of that for me, too! So sorry that you had this experience... Quote Link to comment Share on other sites More sharing options...
Darlene Posted March 1, 2012 Report Share Posted March 1, 2012 my rheumatologist tested for autoimmune stuff. do u want me to find the tests he did? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 1, 2012 Report Share Posted March 1, 2012 That must be frustrating to say the least. I thought that this is what they should be doing. Just a thought - can you have your family dr or an internal medicine dr order the tests for you? I know that means another trip to the doctors, plus time spent explaining your situation, reasons for requesting that etc, but sometimes you have to be more pushy to get them going. In my case it took over 20 ER visits , 3 specialists, and a bit of a miracle to get a diagnostic. Don't give up, I hope you'll soon find a dr that listens.Good luck!Alex Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 1, 2012 Report Share Posted March 1, 2012 I'm not certain if this is still the case, but there was at least one of the autoimmune tests that could only be done by Mayo Clinic. Sorry, my brain doesn't remember which test, but it was one of the ones that if you have it, it causes pots-like symptoms. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 2, 2012 Author Report Share Posted March 2, 2012 Thank everyone, it's too late now, didn't feel like pushing the doctor on the tests plus she had a student in there observing. Just annoyed because I waited 2 months for this appt and my endo said she would do that testing :-( I brought a whole bunch of literature with me but everything I mentioned she said it's for a neuro... She wouldn't even test for Lyme. Meanwhile I was supposed to see a Lyme specialist who was a rheumy, but he had an emergency and canceled all his patients for the day.. but still he was also a Rheumy, so I was hoping this other Rheumy would test me instead... Quote Link to comment Share on other sites More sharing options...
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