Thread: Aps
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Old 02-03-2006, 05:29 AM   #1
LMHART LMHART is offline
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Join Date: Oct 2004
Posts: 167
LMHART HB User
Aps

Hi everyone,
I want to tell everyone my little story about firing my rheumatologist. My original one moved out of the country and one of his partners took over. That was the worst day of my life. He was rude, confusing, abrupt, and uninformed. For some reason, my ANA came back negative (it does that at a certain lab). So, he confused me and I thought that he said that I didn't have Lupus. The more I asked questions, the nastier he got! I had three bad appointments with him and that was enough. He was such a monster! My ins doesn't cover any other doc, so I was prepared to pay cash. He had started me on Imuran and I started bleeding vaginally, hemorragic bladder, nosebleeds, etc. So, I stopped it. Well, I am still bleeding. I was then told about another rheumy who works out of the same building but doesn't take my ins yet. I went to see him and he was GREAT! He answered all those questions plus some. He said he doesn't care about the ANA and that the anti-nDNA was very positive - specific to Lupus. He agreed that I have Cushings from the prednisone (2 years of it) and that they should be used as needed from now on. I am weaning off of them.
But the most interesting things he told me blew my mind. He said that I have RUPUS. A diagnosis of Lupus and Rheumatoid Arthritis. That is why I will have funky blood results sometimes uncommon to just Lupus patients. It is not a dual diagnosis, but something a little different.
The other thing was something that VEEJ caught. I developed that Livido Reticularis awhile back and VEEJ had commented that APS patients usually get that. Well, this doc asked why I wasn't on Aspirin therapy!!! Yep, I have the Hughes syndrome. He was very disappointed that no one told me about it. He gave me my lab copies and there it was! That would explain the symptoms that I have been having. I have positive D-Dimers and am often tested for pulmonary embolisms. I have memory loss, vision loss, and confusion that resolves. I cannot believe that the other doc neglected to tell me something so important and easily treated. Thank goodness that I didn't fly or drive long distances because of the blood clot risk.
I just want everyone to know that they are in charge of their body and they can hire/fire whomever they want. There are so many more shocking details regarding my meds, including mistakes, that I won't bore you with. Just be in charge of your body and don't let people push you around. Make sure that you are being monitored appropriately. My other doc never did a 24 hour urine and knew that I had Lupus Nephritis several times.
I am so glad that I have my friends on this site that get my wheels turning. VEEJ got me thinking and I pursued it and got a second opinion.
Thanks to all of you and I hope that I can help you out someday!
Leslie

Last edited by LMHART; 02-03-2006 at 05:29 AM.