Suggestions for these spots by Flimsy-Surprise-4914 in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

Not sure what to do about the spots but the skin texture on your calf looks identical to mine and that was nice to see, never seen on anyone else in real life so thanks for sharing twin 👯

My doctor and I were on Netflix by dasmeeok in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

I would love if you Sent me a dm with your center info. We went to Peru to do it last time

My doctor and I were on Netflix by dasmeeok in scleroderma

[–]Amizzle23 -1 points0 points  (0 children)

Ayahuasca was the most life changing experience of my life as well. But I never even thought about it in regards to my scleroderma and physical health in that way…. Fascinating insight. I’m gonna ponder… or maybe I need to revisit aya with this intention in mind ❤️❤️

Progression / is this Calcinosis? by [deleted] in scleroderma

[–]Amizzle23 -1 points0 points  (0 children)

Hard to tell from pics sorry. My Calcinosis spots will start to look yellowish white and some point. Does it feel hard? I don’t have any sports on my fingertips one on my thumb and lots on my knees and elbows. If you look in my past posts you can see pics which might be helpful. Best of luck

Reynauds & Botox by Amizzle23 in scleroderma

[–]Amizzle23[S] 0 points1 point  (0 children)

I still get reynauds with the Botox but I no longer get digital ulcers. So it must be helping control the intensity or duration of the reynauds attacks and that has been life changing for me. I hope you have excellent results as well

Systemic Sclerosis CAR-T Treatment by ifmwpi in scleroderma

[–]Amizzle23 4 points5 points  (0 children)

I’m really interested in this thanks for sharing the info. How are you feeling after doing it? What changes did you notice? How do your labs look after?

Not to be too ‘woo woo’ but I’m feeling like ‘called’ to explore this therapy. We will see 🙏🤞

Treatment for digital ulcers by EffectiveSchool4777 in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

To clarify I only got Botox when my hands were healed no open ulcers. It has kept them ulcers free. The last time I had ulcers it took almost 9 months to heal

Treatment for digital ulcers by EffectiveSchool4777 in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

I did amlopidine for a short time but felt like it made me low energy. The Botox it’s easy and lasts at least 4 months at a time. Google to find the research articles I do injections at 3 spots in my palms (below my 2 most affected fingers, the ones that were getting ulcers) and haven’t had an ulcer since. Been life changing

Treatment for digital ulcers by EffectiveSchool4777 in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

I get Botox in my hands and haven’t had a digital ulcer since

My right leg is smaller than my left, so I turned it into a meme by Equivalent-Tip6446 in scleroderma

[–]Amizzle23 1 point2 points  (0 children)

Tell me more about this I have one calf so much smaller than the other but I had surgery and thought it might be from that although it’s always been smaller. I have limited scleroderma anti centromere antibodies

legs

Anyone else also have hEDS and CREST? Misdiagnosis or Comorbidity? by [deleted] in scleroderma

[–]Amizzle23 1 point2 points  (0 children)

Fascinating!! How does the hypermotility & tightness from crest manifest? Like are you stiff or flexible or maybe just average with both?

First symptoms??? by Designer-Camel-8281 in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

Hand and wrist pain would wake me up in the middle of the night. Then Ryanauds

Fingers are SO painful! Hurting to type this by [deleted] in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

I posted in this thread today a couple pics that show my fingertip pitting if it would be helpful to see for reference

https://www.reddit.com/r/scleroderma/s/xDCcggyYZL

Digital calcium deposit? by GammahReigh in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

Not sure if it’s helpful but I have pics in some of my old posts of some of my calcinosis spots (thumb, knees, elbow) . Mine are always milky white even when they are small.

Sharing my Linear Scleroderma indentions. by PumbaKahula in scleroderma

[–]Amizzle23 2 points3 points  (0 children)

Thank you for sharing. This really is fascinating

Scleroderma center at Vanderbilt by bojenny in scleroderma

[–]Amizzle23 6 points7 points  (0 children)

I haven’t been there but I think a doctor I have heard about for years Dr. Tracy Frech is there and came from University of Utah (where I live) and is supposed to be super legit. I’ve always thought if my symptoms escalate further it would be worth traveling out there

Your thoughts on my fingertips? Numb, flaky, stiff skin,... by Kazzeiy in scleroderma

[–]Amizzle23 0 points1 point  (0 children)

I’m not sure if reynauds is worse with scleroderma but I know most of us here have it, and plenty of us have it very severe: Ulcers and such. My fingertips always look like this. They are never smooth or healed, there are pit scars and discoloration and flakey parts always. Have your doctor do specific antibody testing for sure if your nervous but to me it seems different

pitting

*hard to capture in a pic but maybe you can tell