ramakentesh Posted March 16, 2012 Report Share Posted March 16, 2012 Any one here also have sjorgens and if so does your pots have any specific or notable features? Thanks. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 16, 2012 Report Share Posted March 16, 2012 My good POTS buddy who is not on this forum has rare Sjogrens with neuropathy that causes her POTS. All her blood work tests came back negative, until she finally had a salivary biopsy. I'm getting the same done (starting with blood work) to rule it out. I'm on a facebook group for people with POTS and Sjogrens that she started - gathering info as I'm exploring autoimmune causes for my POTS. PM me if you want info Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 16, 2012 Report Share Posted March 16, 2012 Claire - keep us posted on what happens with this? I went down the same road - when blood was negative, I went for the lip biopsy, but that was negative too. I'd be curious to know what your outcome is. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 16, 2012 Report Share Posted March 16, 2012 Claire - keep us posted on what happens with this? I went down the same road - when blood was negative, I went for the lip biopsy, but that was negative too. I'd be curious to know what your outcome is.Will do Naomi, I'm out of other "cause" options, something is wrong with my leg to cause the massive pooling on one side only. I think its a neurapathy of some kind, maybe - I always think I know what could be an answer and then I get none.Thanks. Quote Link to comment Share on other sites More sharing options...
issie Posted March 16, 2012 Report Share Posted March 16, 2012 Claire - keep us posted on what happens with this? I went down the same road - when blood was negative, I went for the lip biopsy, but that was negative too. I'd be curious to know what your outcome is.Will do Naomi, I'm out of other "cause" options, something is wrong with my leg to cause the massive pooling on one side only. I think its a neurapathy of some kind, maybe - I always think I know what could be an answer and then I get none.Thanks.Wondering if you have developed lymphedema because of your surgery. I know you're not being able to walk a whole lot, but maybe you could get physical therapist to massage it for you and try to get the blood flow better in that leg. , I know surgeries can cause issues with those type things.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 16, 2012 Report Share Posted March 16, 2012 http://potsgrrl.blogspot.com/2011/09/what-is-sjogrens-syndrome-and-how-can.htmlI have read a lot in her blog and she is very knowledgable. I am guessing she is on Dinet as I know she has mentioned it. I Just remember link to Sjorgens Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 17, 2012 Report Share Posted March 17, 2012 That is who I was referring to POTLUCK Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 17, 2012 Report Share Posted March 17, 2012 Is she on Dinet? I have enjoyed her site. Tell her thank you for the site. She seems quite bright and offers info. on her site on everything from ABC News Diane Sawyer POTS to research articles. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 17, 2012 Author Report Share Posted March 17, 2012 Many replies but no sjorgens patients. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2012 Report Share Posted March 17, 2012 Well, I could talk about my mom who has it. Lots of autoimmune things in my family. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 17, 2012 Report Share Posted March 17, 2012 True Rama - You could always visit a Sjogrens group and see if they're talking about POTS. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 17, 2012 Report Share Posted March 17, 2012 Rama, you can email POTSGrrl through her blog, she can connect you, and she has both. I can connect you via facebook if you are on there, I know a few folks besides her as well.And no, she is not on Dinet Potluck, I have tried She and I work together on awareness stuff, she's very knowlegable. Quote Link to comment Share on other sites More sharing options...
martiz Posted March 17, 2012 Report Share Posted March 17, 2012 Mine was an informal diagnois. No tests confirming or disproving.It was diagnosed with I was diagnosed with ME/CFIDS and had minor OI at that time. Well, I thought it was minor but looking back, it wasn't minor at all. I just attributed the symptoms to ME/CFIDS.The Sjogrens' doesn't seem to have progressed much, thankfully.Several autoimmune issues going on.Marti Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 17, 2012 Report Share Posted March 17, 2012 Here;'s the facebook support group (its open):https://www.facebook.com/groups/399414810085008/ Quote Link to comment Share on other sites More sharing options...
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