Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Do I have it?


  • Please log in to reply
11 replies to this topic

#1 PhillipsA06

PhillipsA06

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 07 June 2015 - 05:55 AM

First let me say I am currently 18 years old, turning 19 in a few weeks. I am a white male, living in the U.S. . The odds for having Sclero is not in my favor from what I've read online; which is good!

Yesterday mid-day I realized my fingertip, where my fingerprint is felt really odd. The best way to describe it is it's like a coating of glue is on it, and I just want to peel it off. So I went in and washed my hands immensely, even got in the shower. I have really bad anxiety as is, but I went ahead and googled "Fingertips feel like dried glue on them" and was directed to this site. Is it possible that's what I have?

I don't know what else it could be? It's only showing up on my right hand, the ring finger.

To best describe what it looks like is slightly wrinkled, as if I had it in water for a long time. However it hasn't been wet today yet.

Best way to describe it is, if I have dried up glue on it. Or as if I was eating a glazed doughnut, and the glaze died on my finger.

Please someone help? I'm pretty nervous, and worked up about it now.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 07 June 2015 - 06:23 AM

Hi Phillip,

Welcome to Sclero Forums. What you are describing is probably peripheral neuropathy, although please keep in mind that I'm not a doctor and have no medical training.

Please see your doctor for proper diagnosis. Peripheral neuropathy can be caused by many things, including carpal tunnel and diabetes.

You are correct in that googling fingertips like glue turns up our site first. But scleroderma is a very rare cause of this symptom, and largely because of sometimes associated symptoms like Raynauds, and carpal tunnel.

Carpal tunnel is often very mild and can be assuaged by stopping or modifying actions that are impinging the nerves...such as being on the computer.

I'm pretty confident that you will be quite relieved by your doctor's evaluation. I mean considering you likely had the wits scared out of you landing on our site first!

It's the catch-22 of Internet medical information. It can be both a tremendous life-saving boon or an unnecessary scare.

Please let us know how things turn out for you. Because I'm pretty sure it will be quite a comfort for others with this sort of symptom, particularly if that's the only symptom they have.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 PhillipsA06

PhillipsA06

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 07 June 2015 - 06:35 AM

Hi Shelley,

Thanks for a little comfort! I will be seeing a doctor just to be sure, and I will keep you updated on it. Thanks so much in advance. 



#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 07 June 2015 - 06:39 AM

You're most welcome, Phillip.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 08 June 2015 - 07:29 PM

Hi Phillip,

Welcome to these forums!

I'm sorry to hear that you've been having worrying health symptoms; the worse thing is the uncertainty, as it's very easy to Google your symptoms and then let your imagination run riot!

As Shelley has advised you, the symptoms you describe could relate to a number of causes and I would reiterate her advice that you consult your doctor, if only to put your mind at rest.

Please do let us know how you fare at your doctor's appointment and I hope that your fears will be unfounded.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Ron

Ron

    Senior Bronze Member

  • Members
  • PipPipPip
  • 91 posts
  • Location:Canada

Posted 09 June 2015 - 03:43 AM

I developed symptoms when I was 21, diagnosed when I was 24.  My progression was fast at first, then it slowed right down.  But now its active again, and I have internal organ involvement.  Scleroderma for some people goes in waves, its active then it stops. Don't lose hope. I am 52.

I use to work in an auto body repair shop, started when I was 15.  Thats what I believe caused my disease.



#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 09 June 2015 - 10:57 AM

Welcome Phillip

 

Please feel free to ask questions as they arise and we'll do our best, as non medical lay people, to give you an answer of sorts. I hope that you don't have scleroderma and that any health issues are mild but if you do, you are in the right place for sure.

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 09 June 2015 - 11:02 AM

Hello Ron

 

So did you have a gap of nearly 30 years before developing internal organ involvement? I know that in men scleroderma is a very different animal.

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#9 Ron

Ron

    Senior Bronze Member

  • Members
  • PipPipPip
  • 91 posts
  • Location:Canada

Posted 09 June 2015 - 02:39 PM

Hi Amanda,

I am not sure how that message got here, it was for another board. Oh well. In 1990 I spent 30 days in the hospital going for a pile of tests as my kidneys went haywire, it was determined that it was not from scleroderma. I went into remission in 1992 after treatment. At that time I started to see a rheumatologist and was diagnosed with diffuse scleroderma. She moved to another city. I only went to another rheumatologist back in the late 90's, no tests were done. Then nothing for about 15 years. I developed a dry cough around 2008, that I thought was from acid reflux, but now I know it was my lungs. I had a chest xray 3 years ago and they saw changes in the lungs. 2.5 years ago I went to a rheumatologist and she sent me for PFT, and my lungs were "moderate restrictive defect" that was the diagnosis.

I left it alone until this year when I heard loud crackles in my lungs while breathing, so I went back to my family doctor and got another chest xray and the doctor said I am developing interstitial lung disease (ILD). So now I am booked for a pile of tests and specialists to see how bad I really am. I had my first short of breath incident about a month or so ago, that really scared me. So now I wait and see what the tests come back as. My rheumatologist retired, so I have to get another and the waiting list could be a year.

#10 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 13 June 2015 - 09:30 AM

Thanks, Ron, makes you wonder whether you would have been told scleroderma did in fact affect your kidneys if you'd been treated by a scleroderma expert. I'm assuming you weren't as It's awful coincidental. Mind you, anything is possible I guess.

 

I know that not having a good/familiar doctor makes seeking medical attention even more wearisome, funny that symptoms don't get better but worse when we "leave" them but it's a popular approach and one I adopt myself! :lol:  :lol:

 

I hope that your tests as as soon as and that the outcomes are good.

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#11 Ron

Ron

    Senior Bronze Member

  • Members
  • PipPipPip
  • 91 posts
  • Location:Canada

Posted 13 June 2015 - 03:50 PM

Amanda, I had a kidney biopsy, that clearly identified my kidney disease called minimal change, and not related to Scleroderma.  Thats why I was in the hospital for 30 days, piles of tests and after the biopsy, on water pills and 125 mg of prednisone every two days to get rid of the 40 pounds of water I was retaining.  I was 130 pounds, but with the water, I was 170 pounds.



#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 13 June 2015 - 11:12 PM

Good grief, I didn't know the human body could store that amount of fluid! Thanks for explaining about what happened to your kidneys, I find it easy to pin everything on scleroderma. Raining today...scleroderma. 

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)