Jump to content
Sclero Forums
Helen40

Scl-75 positive and lungs

Recommended Posts

Hi!

 

I'm a 40 year old woman from Scandinavia. 

 

I've  been trying to find answer to next question without success: is SCL-75 similar to SCL-70? I've been tested in 2015 to be SCL-75 positive but I was discharged from hospital with no diagnosis.

 

My lungs are the worst. From 2012-2016 there were several 4-6 weeks times in a year with constant feeling of shortness of breath. On the other hand, there's been now almost two years time without significant symptoms in lungs until recently. Is this typical to scleroderma lung involvement, either fibrosis or interstitial lung disease? My x-ray from last week was normal.

 

I also have severe hair loss, telangiectases, Raynaud's, heartburn, and muscle aches.

 

My general practitioner doctor put me with high speed to hospital pulmonologist. I'm waiting (totally terrified!!) to get my appointment and also for an HRCT scan, any day now.

 

Is there any hope...?

 

Share this post


Link to post
Share on other sites

Hi Helen,

 

Welcome to Sclero Forums.  The SCL-75 usually occurs in people who have scleroderma in overlap with polymyositis. Polymyositis is an autoimmune disease that affects the muscles.  It's possible that your shortness of breath might be from muscle weakness, rather than fibrosis, etc.  Also see: Polymyositis and Dermatomyositis.

 

I think it'd be worthwhile for you to consult a scleroderma expert.  They are few and far between but worth tracking down. 

 

The great news is that the myositis is more treatable than the scleroderma, and treatments for it may well improve some scleroderma symptoms, too. 

 

:hug-group:


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.

Share this post


Link to post
Share on other sites

Hi Helen,

 

Welcome to these forums!

 

There is always hope and I'm sorry to hear that you're having a worrying time, trying to correlate the symptoms that you're experiencing. Please note that I have no medical training, but I would say that your blood test results are only a very small part of the scleroderma diagnosis process and the clinical symptoms are more important.

 

As Shelley has advised, it is important that you try and get an appointment with a listed scleroderma expert, or failing that, the very best rheumatologist you can find. I do realise that being in Scandinavia could be presenting a problem for you. If it's any comfort to you, I have lung involvement and the antibody for polymyositis and am still going strong!!:wink: Easy to say I know, but try and focus on your upcoming appointments and tests and whilst I obviously can't tell you how things will work out, I do know that the worry and anxiety will exacerbate the symptoms with which you're suffering.

 

Please do let us know the results of your consultation and HRCT scan.

 

Kind regards,

 

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...