Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

All I want for holiday.....


  • Please log in to reply
5 replies to this topic

#1 Jalee85

Jalee85

    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Mandan, North Dakota

Posted 22 December 2011 - 11:53 PM

All I want for holiday is a University or Hospital that has a Nailfold Capillaroscopy and a doctor who knows how to use it and interpret the results!

If someone has had this done to them before you would make my day by letting me know who did it and where!

Sadly I have lost my rheumatologist and the new one thinks there is nothing wrong with me at all she is not even seeing me again or continuing to prescribe me any medications for the connective tissue disease that I had been diagnosed with. I know I have capillary drop out and this is common in Scleroderma, so if you have had the nailfold video capillaroscopy test and can tell me where I can go I'd be very appreciative!

Jalee

#2 Joelf

Joelf

    Star Ruby Member

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

Posted 23 December 2011 - 03:09 PM

Hi Jalee,

Sorry to hear that you're no longer seeing your previous rheumatologist.

I have had the nailfold capillaroscopy so understand exactly what you describe, but it was done at The Royal Free Hospital in London, so unfortunately this information will not be a lot of help to you.

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)


#3 Jalee85

Jalee85

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 30 posts
  • Location:Mandan, North Dakota

Posted 23 December 2011 - 06:11 PM

Oh my goodness! Yeah it may be quite an expense to get to London let alone out of state.

I know that my capillaries are abnormal. My rheumatologist who left her position for something else had looked at them with an opthamaloscope. She said they were inflamed and had drop outs in a sceroderma pattern, but she is the only one that has ever looked at them really well and now she is gone and this new rheumatologist doens't have any time to help me.

She didn't even prescribe me my meds that my old rheumatologist had me on. And one of them is the Revatio for Raynauds the other was plaquenil. Sad to say I'm not sure how much they were really helping anyways but that's not really the point. With the video techinque they could take photos and actually measure things and see how far along everything is. It's been nearly a year since I may have started the Raynauds and I'm glad I have no skin changes, however it makes me think with new rashes it may be dermatomyositsis vs scleroderma, but I'm not sure at all.

Jalee

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 27 December 2011 - 06:07 AM

Hi Jalee,

Is it possible for your primary care doctor to continue the prescriptions now, or for them to refer you to a new rheumatologist?

I don't know what your rash is, but you may want to see a dermatologist, as they might be able to do a skin biopsy to diagnose dermatomyositis (or whatever it is). Fortunately, the distinctiveness of the dermatomyositis rash makes it usually very easy to diagnose.

My tip -- for all of us with a new or suspicious rash of any sort -- is to take photos of any rash right away. Sometimes the rashes resolve before the appointment and leave us feeling a tad idiotic and sometimes the pattern of the rash, especially in combination with other symptoms or test results, can aid significantly in getting, or pursuing, a diagnosis.

Here are some warm hugs for you, Jalee.

:emoticons-group-hug:
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 Jalee85

Jalee85

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 30 posts
  • Location:Mandan, North Dakota

Posted 03 March 2012 - 08:26 PM

I went and got an USB microscope and I got pictures; they are definately abnormal.

Jalee

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 05 March 2012 - 02:27 PM

Hi Jalee,

Is the new rheumatologist at the same facility as the rheumatologist you lost? If so, this new rheumatologist should have access to any/all reports from the previous rheumatologist. I would susupect that you could get copies of the previous doctor's reports by going to medical records and filling out a form, should you not have copies now.

I've been seen by several rheumatologists over the years and it has never been suggested that I have a nailfold caplliarscopy. I would certainly think that a Dermatologist could see that one is done for you to make a determination.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)