I sincerely hope this message finds everyone in good health. I am joining this forum because my mother (age 61) has been diagnosed with Scleorderma. I just got back from the hospital with her and possibly like everyone else here when they were first diagnosed, scared myself immensely while researching for this unheard disease online, this is also how I found this website, and what a great relieve to read your real life experiences.
My mother has had her fingers turn white and numb since almost 15 years ago, but it was mild and didn't affect her quality of life at all, so we didn't take it too seriously. She saw her family doctor regarding this issue in the past but was waved away diagnosed because there were no other symptoms. Recently, she has been experiencing having dry mouth and the inability to create much saliva. She has to keep hydrate her mouth by drinking water when she talks and eats. She also felt difficulty swallowing, this has actually first occurred also about 15 years ago, but very vaguely, and is becoming more noticeably recently.
We saw a Rheumatologist and ran many tests. Her result indicators seem different from what I see in this Forum (maybe because we are in Canada ? ) But here is the diagnosis:
Scleroderma Disease profile : Positive
ANTI CENP A : High positive
ANTI CENP B : High positive
ANTI Ro52 : Weak Positive
And the explaining says : This is associated with the limited cutaneous form of scleroderma or CREST syndrome, and is also seen in patients with Raynaud's phenomenon that may progress into scleroderma. So I am assuming she has CREST because most of her symptoms also fit.
In the meantime, we have also done a scope to see her colon and esophagus and turned out that she has a narrowing/stricture at the lower part of her esophagus.
She has also done an ECHO which came out healthy ! (phrew)
What worried me the most is that, she had done a breathing test (PFT) and it showed "moderately reduced diffusion capacity with mid air trapping and normal airflow rates" These features would be compatible with interstitial lung disease , pulmonary vascular disease, and emphysema. I then went on researching for lung involvement in CREST and it scared me even more !
All the google suggests that came out were about life expectancy and the outlook for lung involvement really doesn't look too good.
Although my mother does not have any lung related symptoms.
I guess the main reason I'm here is to seek a peace of mind before we get to meet with the doctors again, and also to hear from your experience !
Thank you so much in advance for your responses, they will mean a lot to me !