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celiesblues

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  1. My doctor recommended a heat band product that is meant to be worn around the wrist. to me yesterday (for relief of Raynaud's): Has anyone tried it?
  2. Hi everyone, I saw my doctor on Friday and says he doesn't think what is happening to my hand's is autoimmune as my ANA & RF screen were negative last yr. . He says though my Raynaud's is "secondary form" he thinks it's cause is hormonal (ie the birth control pills I use to control my Poly Cystic Ovarian Syndrome). He's having me repeat the ANA & RF tests as it's been over 6 months and thinks I should be checking at that rate for a while. He *also* says (as an eye specialist told me when seeking treatment for abrasions) that he thinks I have sicca syndrom (Sjogren's) because I've tested positive with the Schirmer's test (that measures dryness) and my mouth was coated. He said that he might want to do a biopsy of one of the glands in my mouth to test for that at a later time. What is strange to me is that I can find no link, no matter how I search on the net, to Raynaud's and birth control pills. Has anyone every heard this? And so severe? And Sjogren's is autoimmune, isn't it? I hate leaving an realizing all the things you *didn't* ask... I will see him again in 3 weeksso at least I'll have a second chance. For the Raynaud's he wants me to start taking L-Arginine (supplement) 3x a day... to help the circulation.... At first I was relieved and reassured but now I'm swirling in those ambiguous loose ends... :-((
  3. Well, my dr had an "emergency" and canceled on me today so I'll be seeing him on Friday instead. Amanda, snowbird thank you so much... it was never clear to me if the blood tests had difinitively ruled it out. And now I have a host of more symptoms since I was with him last yr... And just last night I noticed the skin down the insde of one of my thumbs has begun go harden. Lovely. I'll let you all know how it goes on Friday. Anxious, anxious....
  4. Thanks everyone for your welcome and your replies. And thank you so much jefa for the article on pitting vs non-pitting edema... I get it now. I'm definitely "pitting" though to look at my fingers, I'd never think there was fluid retention. They're so... deplteted and wrinkley looking. I was thinking the pitting had to to do with these weird perminant lines down my fingertips... even when I'm as warm as I can get and my fingers are as plump and rosey as they will get there are these weird, perinant lines down them, some very deep. Does that feature sound familiar to anyone as well? The doctor I'm seeing on Tues is a dermotologist/rheumotologist who diagnosed my Raynaud's as 2ndry form last year. When the blood tests didn't turn anything up, I tried to push everything out of my mind and the warmer weather helped though my body kept getting less and less familiar. And I was now so cold sensative that it was only the hotest of of the hot summer days (upper 80s & 90 degree) where I found relief from my Raynaud's and didn't have to have some kind of jacket with me. I chill soooo easily now. My big questions - Can you have normal blood results and have scleroderma? Thank you again everyone. I was feeling so alone with my fears.
  5. Hi there, I'd appreciate your help. I was diagnosed with the secondary form of Raynaud's last year after about four years of symptoms. It was considered secondary by my dermo/rheumotologist because I have the feature (can't remember the medical name) where skin grows up behind my nails onto the nail itself. I took a series of blood tests but nothing turned up. This year my Raynaud's is in overdrive and my hands are deteriorating but something fundamentally different than before is occuring. My fingtertips have permanent lines down them and become wrinkled like prunes (like they've been submerged under water for hours) when I'm slightly cold. The quality of the flesh is bizarre... it's more like silly putty than flesh. I touch anything and the flesh indents and stays that way for disturbingly long periods of time. I cut my food with a knife an fork and have deep indentations that remain... I set my alarm clock and the finger that pushed the button has a huge crater that remains for 10-15 minutes. Now, on the side of my index finger, at the tip, where my thumb nails meets skin when I hold a pen to write has become hard, numb and white. It looks like my fingerprint is disappearing in this patch and the indent when I write (trying to be wary) is so deep and frightening. It seems like dead flesh. The skin is so dry in general that it's cracking open all over.... over a week ago the skin on the side of both my thumbs cracked open really deep and is very hard to get to heal. It's so much worse than last year and the temperture is still in the 60's (I'm in NYC). I had strongly suspected scleroderma last year (when we began looking for an autoimmune explanation) because of the myriad of other symptoms that were layering on for years... I've seen so many doctors for these varying things with no explanation I'm 30 (female) and have been losing my hair for at least 5 years (that's when I noticed, at least)... something that seems to have accelerated in this last yr... extreme dry eye (in winter I have to use drops several times a day and have gotten abrasions when I didn't). Near continual chest pain, the hands that are fragile and cracking open and... in the mornings swollen and stiff... all my joints are swollen and stiff in the morning. I made an appointment with the dermo/rheumotologist for next Tuesday, because, I'm quite frankly terrified about my hands. All the fingertips are sensitive and these strange permanent lines... maleable flesh... Do these recent changes to my hands sound like scleroderma to you guys... is this what "digital pitting" is? I keep googling but can't find an explanation I understand for digital pitting. Do the permanent lines and silly putty flesh seem familiar? I'm so scared.... even now, I'm typing with out my index finger (it's so sensitive). I'd really appreciate any help or insight you guys may have. Something is just so .... wrong :-((
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