Discussions By Condition: I cannot get a diagnosis.

Play-doh like fingertips. Doctors shrug and say it's weird.

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Rachkin
  • November 3, 2006
  • 04:13 PM

Hi everyone,

I have been going to different doctors and specialists lately for some problems I have been having (used to have svt but am still getting heart palpatations and stomach problems with my throat swelling up).

My problem that no doctors seem to know anything about is why my fingertips are very tender, cold and act like play-doh. I can push the skin around and shape it and it will stay like that for awhile. My thumbs are the worst. It seems like I don't have enough padding in them. They get very wrinkled in the cold also. I'm only 33 so I don't think my fingertips should be so wrinkled yet. My parents' fingertips are fine and they are in their 50's.

I have been tested for Raynaud's phenomenon but those tests came out negative. After my doctor did this test she has no clue what it could be. I've been sent to thyroid and heart specialists for my other problems (now they think I might have celiac disease). I showed all of them my fingertips and they have no idea what it could be either. This doesn't seem like a symptom of celiac disease.

It's really hard to open any containers with my fingertips like this. I have some permanent creases in my thumb now from trying to open a nut last year around Christmas.

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10 Replies:

  • Hi Rachkin and I hope you don't mind my asking but my wife seems to be suffering from what seems like exactly the same problem apart from she hadn't noticed the cold so much. She says that her fingers seem strange - as though the skin is too thin and what she has, she can move around. She says it is like she has had her fingers in water for too long. It is obviously concerning her. May I ask, did you ever get yours sorted out and if so, can I ask what the diagnosis was and how you were able to treat it? Very many thanks Paulpal@loseby.co.uk
    Paul Loseby 6 Replies
    • January 6, 2008
    • 04:43 PM
    • 0
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  • This sounds like Hereditary Angioedema. Try here: http://health.nytimes.com/health/guides/disease/hereditary-angioedema/overview.html
    aquila 1263 Replies
    • January 8, 2008
    • 00:09 AM
    • 0
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  • If there is a university hospital/teaching hospital in your area, try to go there. Rare things like this are often hard for regular doctors who have never seen them to diagnose. At university hospitals, they have usually seen everything.
    BesideMyself 41 Replies
    • January 8, 2008
    • 02:24 PM
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  • Many thanks for the feedback although I don't think that it can be the Hereditary Angioedema as it is more of a nuicance than a debilitating condition. Kindest regards Paul
    Paul Loseby 6 Replies
    • January 8, 2008
    • 07:30 PM
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  • Look up Ehler's_Danlos. Some of the varied symptoms are doughy and sagging skin. There are about 10 different types of this problem.
    rad-skw 1605 Replies
    • January 9, 2008
    • 00:08 PM
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  • Hi Paul,Sorry to hear that your wife has some of the same symptoms as I do. I wish I could give you some answers but I still don't have them myself.The doctors did discover that I had low iron, B12 and that I also have gluten-antibodies. I am now on a gluten-free diet and got my vitamin levels back up to normal. Even though this solved some other problems I was having, my play-doh symptoms did not improve. One specialist thinks it still might be Raynaud's Phenomenon even though the test results were negative. I just received some medication to try out to see if it helps.Thank you everyone for the excellent advise. I am very interested in asking my doctor about Ehlers-Danlos syndrome. Some of those symptoms really seem to fit.
    Rachkin 2 Replies
    • January 11, 2008
    • 03:13 PM
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  • Hi Paul,Sorry to hear that your wife has some of the same symptoms as I do. I wish I could give you some answers but I still don't have them myself.The doctors did discover that I had low iron, B12 and that I also have gluten-antibodies. I am now on a gluten-free diet and got my vitamin levels back up to normal. Even though this solved some other problems I was having, my play-doh symptoms did not improve. One specialist thinks it still might be Raynaud's Phenomenon even though the test results were negative. I just received some medication to try out to see if it helps.Thank you everyone for the excellent advise. I am very interested in asking my doctor about Ehlers-Danlos syndrome. Some of those symptoms really seem to fit.
    Rachkin 2 Replies
    • January 11, 2008
    • 03:21 PM
    • 0
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  • Thanks for getting back to me. I have checked with my wife but her fingers don't get cold. I checked the symptoms for the Raynaud's but it doesn't seem to be the same. I do appreciate your getting back to me though. Kindest regards Paul
    Paul Loseby 6 Replies
    • January 12, 2008
    • 03:56 PM
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  • Does it look like this? http://images.google.com/imgres?imgurl=http://www.haea.org/images/hand.jpg&imgrefurl=http://www.haea.org/pamphlet.php&h=226&w=638&sz=25&hl=en&start=2&um=1&tbnid=AKOZGIoFR0dV-M:&tbnh=49&tbnw=137&prev=/images%3Fq%3Dangioedema%2Bhand%26um%3D1%26hl%3Den%26rlz%3D1T4GGIH_enUS243US243%26sa%3DN
    aquila 1263 Replies
    • January 31, 2008
    • 05:43 PM
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  • I've had the same thing on and off for a couple of years. Doc's were confused, looked at me like I was mad. Tested as chronically iron and B12 deficient, and don't seem to be able to retain iron in my body. Improvements in my diet with iron, b12 and vit C seem to have helped - I've also increased magnesium intake. Now I only get it every now and again and it goes quite quickly. Hope this helps, if you get a diagnosis, I'd love to know what it actually is!
    Anonymous 42789 Replies
    • February 1, 2008
    • 00:15 AM
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