Just diagnosed (but had been suspicious)

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Regular Member

Date Joined May 2012
Total Posts : 277
   Posted 7/6/2012 4:08 PM (GMT -6)   
Well, went to the second Rheumatologist today. I wanted a second opinion since the diagnosis of Ehlers-Danlos Syndrome did not make sense (it did somewhat, but didn't sit well with me). The doctor today said no to that diagnosis, and he told me why. He said that I do have hypermobility (in other words, I could be a human pretzel if I wanted to). He said that that is a part of ED, but can stand alone too. He told me what else you experience with ED, and he is right. It did not fit me. He also did say that he believes I do have Lupus as well as Sjogren's Syndrome. He mentioned a couple other things, but wants to wait until the blood work comes back (11 vials - the last time I had blood drawn (2 months ago) they were all negative). My ANA was positive the last time though. 1:320 and Homogeneous. I have no idea if it will be positive or negative, but he did tell me that ANAs tend to fluctuate, and it may not show positive, or it may show much higher. When I aked him what it meant if they all were negative, he told me to just wait and see and we would deal with it at that time. Honestly, it was too much to process, so I didn't catch everything he said. I did like the doctor though. He looked at the whole picture instead of focusing on one thing (that turned out to be wrong anyway - the first doctor told me it was ED, and that there were no tests (not true) and that I just had to research and accept that I had it. Right.)

The doctor is putting me on a trial of steroids. I see him again in three months, but in the mean time, I have two months of some steroid (I forget the name). He wants me to try one month for sure, but two if I needed it. That will leave me with one month of nothing if it helps, but he said he wanted to make sure that it worked and was not a fluke (or something like that).

Anyway, got to go. :)

Regular Member

Date Joined Jul 2012
Total Posts : 54
   Posted 7/8/2012 1:38 PM (GMT -6)   
Try to take fish oil and evening in primrose or borage oil. They bring your GLA up and can normalize your ANA. It worked for me. I take four puritan's pride fish oil and four Twinlabs Mega Primrose oil 1300. I test negative now. You might want to start with two each and stay there if it works. I still have pain and bad days. Compared to before I am on vacation. I try to exercise, walk and eat the right foods. High fat and alfalfa sprouts are out. I am gluten and dairy free as well. Gluten out of necessity and dairy because the arthritis stays under control. Good Luck to you and remember to know that you can help yourself and the doctors will help to monitor you and keep you on the right path.
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