jkapache Posted October 17, 2006 Report Share Posted October 17, 2006 MY RHUEMATOLOGIST WHOM DOESNT KNOW ANYTHING ABOUT POTS, BUT REFERRED ME TO MY POTS DR, IS RUNNING SEVERAL TESTS TO RULE SCLERODERMA OUT. HE DOESNT THINK THAT I HAVE IT, BUT BECAUSE I HAVE RAYNAUDS PHENOMENA AND ESOPHGEAL DYSMOTILITY- TWO 'SIGNS OR SYMPTOMS' HE WANTS TO RULE IT OUT. HAS ANYONE ELSE EVER HEARD OF THIS BEFORE? I WENT TO HIM TO SEE IF THERE WAS ANYTHING THAT I COULD DO FOR MY RAYNAUNDS.... LOOKS LIKE I MIGHT HAVE JUST OPENED UP ANOTHER CAN OF WORMS.... BUT THATS OK- IF IM GONNA HAVE ALL THIS STUFF- THEN I MID AS WELL HAVE A NAME- AND RULE EVERYTHING OUT! Quote Link to comment Share on other sites More sharing options...
bren62 Posted October 17, 2006 Report Share Posted October 17, 2006 It's common for a person to have both, that is why the doctor is checking you for scleraderma. My father in law has had both for years and has tried many different dreatments. He doesn't have POTS though, so I don't know how that would effect those conditions. He has had to have his esophagus stretched multiple times due to the scleraderma. Being on nexium has helped him a great deal. Scleraderma causes the skin to become tight and nonflexible. It can also affect the internal organs and become life threatening if that happens. My father in law has the chronic kind and has had it for at least 30 years, along with the raynauds. Quote Link to comment Share on other sites More sharing options...
jkapache Posted October 17, 2006 Author Report Share Posted October 17, 2006 BREN- THANKS FOR THE REPLY! I AM HAPPY THE DR IS WILLING TO CHECK OUT EVERYTHING. I ACTUALLY AM ON NEXIUM TOO. BAD ACID AND REGERGATATION- ALTHOUGH NOT SURE HOW MUCH IT IS HELPING/ OR SUPPOSE TO BE HELPING THE REGERG. MY DR ISNT SURE IF THE POTS HAS ANYTHING TO DO WITH THE RAYNAUDS OR NOT..... GUESS WE MIGHT FIND OUT WITH ALL THE TESTS HE ORDERED!It's common for a person to have both, that is why the doctor is checking you for scleraderma. My father in law has had both for years and has tried many different dreatments. He doesn't have POTS though, so I don't know how that would effect those conditions. He has had to have his esophagus stretched multiple times due to the scleraderma. Being on nexium has helped him a great deal. Scleraderma causes the skin to become tight and nonflexible. It can also affect the internal organs and become life threatening if that happens. My father in law has the chronic kind and has had it for at least 30 years, along with the raynauds. Quote Link to comment Share on other sites More sharing options...
masumeh Posted October 17, 2006 Report Share Posted October 17, 2006 I've never heard of this disease before. Hope you and your doctor can find the right treatment for you! Quote Link to comment Share on other sites More sharing options...
willows Posted October 17, 2006 Report Share Posted October 17, 2006 When I was first diagnosed way , way back in 2000 by my rheum man as I have Raynaud's he thought I had scleroderma .............you get patches of tight shiny skin , patches of rough skin, have difficulty swallowing , bending , joints are tight ................ Girl ,you dont want it as it is one of the conditions that just keeps on getting worse and worse and the end is bad .When my husband and son where told , they cried and cried because they knew that I may have this condition and were dreading the doctor actually confirming it .So based on what the doctor saw on he ( my skin then was horrendous) and my tight joints he said 'it is '...............thank heavens he was wrong , but it scared me so much, scleroderma is something I dread getting and I'm always aware of my skin now and any strange shiny or rough tight skin on my body .Hope your Doctor has taken the wrong path , let me know .Willows. Quote Link to comment Share on other sites More sharing options...
persephone Posted October 17, 2006 Report Share Posted October 17, 2006 That's interesting as I have Raynauds but very loose, slack joints and sin rather than tight. How bizarre. Sorry I can't offer any help or suggestions.are there any other EDS people with raynauds? Do the two co exist? Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 18, 2006 Report Share Posted October 18, 2006 Hi Jess,Yes, I've been evaluated for sclerodrma numerous times. I also have severe Reynaud's and problems with my esophagus. Usually bloodwork is the first step. If your ANA's are high, your rheum will probably do more checking. Google CREST syndrome. It's much more likely (hopefully) that that's what's going on. I have many signs of scleroderma, but my ANA's have never been high. Thank God. Scleroderma can be a scary disease. Please keep us posted on your status.Julie Quote Link to comment Share on other sites More sharing options...
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