Major Autoimmune/Scleroderma Fear

Hi All - Male here, just under 40 yrs old. Have HA for quite some time and my recent scare and constant worry, for the past 1.5 yrs, is Scleroderma.

Started with possible Raynaud last winter. Feet get very cold. Wear slippers all the time. They sometimes get a purple tingle to them when really cold or with extreme anxiety and emotion. They sometimes burn when out in the cold and get slightly blotchy/white at the top of the big toe. This came out of nowhere after a death in the family/emotional trauma.

Had negative ANA, blood flow test etc and everything was fine.

Then came gastritis/gerd. Had an endoscopy and this went away after it. There were no findings. Stomach is ok for now. I think the fear of scleroderma really got my nerves and stomach irritated.

Then came spider veins on my face after a sunburn. Tiny little capillaries; keep getting more and more. Have been to family care and two dermatologists who said it was nothing or mild Rosacea. Also had red dots on my body and hand and was told this is all normal. I keep noticing more and more little red veins on my face (I’m very pale).

Here I am in full panic. Have a ton of symptoms and blown off by every doctor I’ve seen. I feel better for a couple of hours after an appointment and then start googling. Then more and more symptoms appear that match scleroderma. The family doctor doesn’t think I need to go back to rheumatology ( 3 ANA and other tests over the past 6 years all negative). On top of this I have extreme visual disturbances.

Any insight is greatly appreciated.

I have worried about scleroderma, too, and I have had positive ANA since 2017 - but no scleroderma.
I also have rosacea and very fair skin. It is annoying, but common and harmless.
Raynaud's is also very common and very few have an underlying autoimmune condition.

If your ANA is negative, it is HIGHLY unlikely that you have scleroderma. Try not to worry 😊

Quote:

---

Originally Posted by maryjane91

I have worried about scleroderma, too, and I have had positive ANA since 2017 - but no scleroderma.
I also have rosacea and very fair skin. It is annoying, but common and harmless.
Raynaud's is also very common and very few have an underlying autoimmune condition.

If your ANA is negative, it is HIGHLY unlikely that you have scleroderma. Try not to worry 😊

---

Thanks for the kind response. It is scary when you google a serious disease and slowly get multiple symptoms of that disease over time! The related anxiety doesn’t help anything at all

Hi. I'm sorry this is a fear for you. I was initially diagnosed with MCTD which is Mixed Connective Tissue Disease...it blew my mind. MCTD is basically a dangerous cocktail of Lupus, RA, Scleroderma and Polymyositis. Lots of scary words there! I was already a health anxiety sufferer so you can imagine my state of mind after diagnosis.
I continue to test positive for ANA and it's looking like it's finally settled on Scleroderma.
I can tell you that I really don't have the anxiety towards my disease like I used to. I think because I actually have it, I no longer feel scared. If that makes sense? Anticipation is horrible and stress is no good for autoimmune diseases.

Hang in there!

I wanted to touch on your gastro issues. For me with Scleroderma my gastrointestinal problems are very specific. I vomit undigested food and end up getting pseudo blockages. While Gerd is uncomfortable it isn't setting off alarm bells of Scleroderma for me.

Hi tnt808... Have you heard of Dr. Brooke Goldner? She has a website Calles goodbyelupus.com and a YouTube channel. She has also written books about overcoming autoimmune diseases including connective tissue diseases. Just thought I would mention her, in case it could help 😊

Quote:

---

Originally Posted by maryjane91

Hi tnt808... Have you heard of Dr. Brooke Goldner? She has a website Calles goodbyelupus.com and a YouTube channel. She has also written books about overcoming autoimmune diseases including connective tissue diseases. Just thought I would mention her, in case it could help 😊

---

Hi! No, I haven't heard of her. Unfortunately, most doctors in the US know lots about Lupus but very little about MCTD and even Scleroderma. Much of the information I have about my disease is from my own research. Thanks for the information..I appreciate all new info!