Scleroderma? Looking for general advice - 26 yo male
First off, I just want to say I understand no one can diagnose anything. Just looking for advice.
Have had what was believed to be Primary Raynauds all my life. Remember fingers going white in the playground at 5 years old.
Primary Raynauds has been common in my family, multiple relatives have it.
Was diagnosed at 11 and have had shiny finger since around that time. 8 years ago similar issues started affecting only 3 of my toes on my left foot, didn’t think much of it, just part of the Raynauds. Also since around ages 13/14 I have had issues with my left knee, constant cracking but no pain.
Never had any other symptoms until this past year. Start of 2026 I got two blocked oil glands in quick succession in my left eye. From March to April I experienced a period of acid reflux and digestive issues. Did 6 blood tests with my gp, they all came back normal but was told there was evidence of an infection that was settling down. Since April my digestion has returned to normal.
The past two or so months however, I am experiencing more discomfort in my left knee and hip. A sort of numbness, not even pain.
Been visiting my gp over the past number of months. Seen two doctors and they have both told me not to panic as many people with lifelong primary Raynauds experience skin thickening and tightening due to prolonged exposure and the stability of my symptoms over the years is a positive sign. Both relaying to me to remember that non of these symptoms are entirely new.
They also said would be unusual for digestive issues to go away, and eye condition to resolve.
Was told systemic scleroderma usually affects joint’s symmetrically, so wouldn’t be typical to just affect left side and not right. Points to maybe a structural issue.
I am just worried to why these things are worsening all within the same year? Both doctors still believe it’s more likely primary. Especially with my families genetics and history of Raynauds.
Anyway, we did an ANA test 2 weeks ago. Doctor said they would be in touch regardless of result. Have got a 5 minute telephone appointment next Tuesday to discuss results. The uncertainty is getting to me, just looking for general advice? Everyone is saying to just carry on as normal but I’m also like should I be mentally prepping myself for bad news.