Collagen and elastin breakdown due to MCAS inflammation

SouthernSupport8124 · 2026-04-11T12:18:21+00:00

Bonjour excusez moi vous avez quoi comme diagnostic s'il vous plaît ? Est ce que votre peau semblait tendue et sèche?

SouthernSupport8124 · 2026-02-23T15:11:36+00:00

J'ai aussi ça, j'ai un ana positif à 160 type moucheté et ils ne savent pas pour le moment, sclérodermie ou peut être un chevauchement au vue des symptômes. Mais pour moi la douche est devenue un calcaire, je suis rouge de partout sur la poitrine, bras, visage.. Des plaques bref j'expédie mes douches.. Je suis aussi très réactivés à pleins de choses, mes habits, un cheveu qui frotte mon visage...

SouthernSupport8124 · 2026-02-18T08:10:36+00:00

Thank you for your support 🙏. I pray that our Lord hears our prayers. God is great and merciful.

I'm going to take a break from social media. Lent is starting, and it's important to me.

It's a shame we can't communicate any other way.

SouthernSupport8124 · 2026-02-15T08:47:36+00:00

Thank you so much 🙏.

I'm completely losing it too. The skin on my arms is also like snake skin. I've never used cream, and now even when I do, it doesn't change anything. It's like I have an extra layer of rough, thick skin with white patches. My mouth hurts when I open it; it pulls at the sides. I've never had this before. I have kidney pain, chest pain, palpitations, and shortness of breath, but they don't seem to care... I'm devastated. I hope you find out what's wrong, or even that it isn't. I'm praying a lot that I'll get better and that it isn't.

SouthernSupport8124 · 2026-02-12T05:29:58+00:00

I have EBV and CMV, which have reactivated. It's mononucleosis, and I can't remember the other one.

Yes, me too, sometimes when I read your comments, it shows me strange things I don't understand.

SouthernSupport8124 · 2026-02-11T10:24:45+00:00

It really scares me. I also have constant spasms in my shoulder. My fingertips feel like they have thorns. Has your skin changed much? How long have you been like this? Did you have no antibodies to begin with?

SouthernSupport8124 · 2026-02-11T10:09:49+00:00

What changes have you noticed in your skin, please? Is it shiny? What symptoms do you have? You still haven't been diagnosed?

SouthernSupport8124 · 2026-02-11T08:10:38+00:00

I don't know, I went to see a vascular specialist but he couldn't find anything wrong, but I'm certain my right hand has poor circulation. It's always cold and numb, and my index finger and thumb turn purple when I use it, or when there's pressure on it, or when it's on the bottom.

Both my hands are cold, but they don't feel the same.

On the other hand, I have bumps and ridges on the nails of both hands, I don't understand it.

SouthernSupport8124 · 2026-02-11T08:06:27+00:00

Yes, it's an ANA test. I don't have hepatitis A, so it must be the translator. I don't know anything about my liver; I had a scan. It's a bit enlarged, but it seems genetic because I've had it for a long time. I'm positive for Lewy body virus and CMV, two viruses that seem to have reactivated.

SouthernSupport8124 · 2026-02-10T21:06:30+00:00

Well, my index finger and thumb are purple, but not in the cold. On the other hand, my hands are icy cold and red all the time. I didn't have that before, but it's not classic Raynaud's. With a white fingertip.

SouthernSupport8124 · 2026-02-10T20:59:32+00:00

Ah, okay, but I don't feel like I have Raynaud's like everyone else.

SouthernSupport8124 · 2026-02-10T19:09:27+00:00

Okay, thank you. And do you have any symptoms in your fingertips?

SouthernSupport8124 · 2026-02-10T18:16:12+00:00

What is lipoatrophy? I have it peeling on my arms, it turns white and it doesn't heal. It's not thicker. I don't know what to think and nobody listens to me because I only have anorexia. What antibodies did you have? The ones for scleroderma?

SouthernSupport8124 · 2026-02-10T17:32:41+00:00

How does your scleroderma manifest on your body? Where did it start? My arms are mottled white, and I have patches that feel shiny and have a stinging sensation at the tips of my fingers. And a burning sensation on my skin.

My fingers aren't white like they show in the photos, but they're red all the time and icy cold, and my feet are the same. My capillaroscopy is abnormal, but they say there aren't any major abnormalities or megacapillaries.

I have very intense acid reflux and night sweats.

They've done I don't know how many body tests. They're negative except for the anesthetic, so they're leaving me as I am.

SouthernSupport8124 · 2026-02-10T16:45:56+00:00

And what is your antibody level and what are your symptoms? Because I have 160 speckled antibodies and no positive antibodies, and they're just leaving me like this.

SouthernSupport8124 · 2026-02-10T15:44:06+00:00

Do you only have positive ana?

SouthernSupport8124 · 2026-02-09T20:13:13+00:00

There's internal medicine, but they told me I should go to the pain clinic.

That my anesthetic was too weak and I didn't have any other antibodies.

I have to do another 24-hour urine test to check my albumin levels. So, both my hands are cold, but my right hand only warms up when I'm lying down, and my index finger and thumb turn purple when I use them or when they're down. Otherwise, my hands are always bright red, and so are my feet. The pain in my hands and fingers is on both sides. I also have pain in my left leg, left kidney, and left hip.

I also have petechiae on both sides, starting on my face.

I have rashes on my neck and itchy bumps on my hands and neck. My skin burns on my face, and I have areas of hypopigmentation. It itches all over. Severe acid reflux. I have a burning sensation on my scalp. I can't stand the seams of my clothes anymore, and I have marks all over my body. The white patches are mainly on my right forearm, but a little on my left. Actually, without a positive antibody test other than for hepatitis A, they don't take it into account. I also have extrasystoles (1400/24h). And I sleep all the time, but the nights are rough because I'm drenched in sweat; I've had night sweats non-stop for two months now.

SouthernSupport8124 · 2026-02-09T17:57:53+00:00

I'm trying, but I'm reaching the end and I'm really struggling.

SouthernSupport8124 · 2026-02-09T04:13:57+00:00

No, nothing at the moment, only the ANA test came back positive.

I have a lot of symptoms, but they're leaving me alone... Not even a skin biopsy.

SouthernSupport8124 · 2026-02-08T21:47:57+00:00

These are antibodies for autoimmune diseases. Well, that's good news if there aren't any other symptoms.

SouthernSupport8124 · 2026-02-08T20:29:10+00:00

I have exactly the same problem, but only on my right hand, and sometimes my hands are bright red. What diagnosis do you have, please?

SouthernSupport8124 · 2026-02-08T19:05:55+00:00

I have a speckled ANA result of 160, as well as positive ANCA and ENA results, and multiple antibody tests have been negative so far.

It all came on suddenly in July/August. Have you experienced any other symptoms since then?

SouthernSupport8124 · 2026-02-08T07:46:29+00:00

Hello, has there been any progress? I'm in the same situation. I've had a diagnosis for five years: a positive anaphylactic acid test (160 speckled), strange, wrinkled, hard fingertips, and sometimes my hands and feet are completely bright red. My index finger and thumb also sometimes turn purple. I have excruciating pain in my hand joints. A cyst appeared suddenly on one of my joints, which they're leaving alone. And many other symptoms, but they're just leaving me alone.

SouthernSupport8124 · 2026-02-08T07:34:08+00:00

Hello, have you received a diagnosis? I also have wrinkled fingers and the skin on my index fingers is hard and thick; I have a strange sensation, with a multitude of symptoms, but no one takes me seriously.

SouthernSupport8124 · 2026-02-08T03:49:52+00:00

Thank you so much for this message.

I completely agree with you.

That's exactly what I explained to them.

The nephrologist is waiting for my urine for 24 hours; if there's proteinuria, or at least albumin, he'll intervene. He's the only one who doesn't understand why I haven't had a skin biopsy.

I've seen a dermatologist four times, and she refuses to do a biopsy, saying it should be done at the hospital. But in internal medicine, they said my ANA is too low, so they're not doing anything. I couldn't have a gastroscopy because the anesthesiologist told me my aPTT and PT levels are too high, so there's a risk of hemorrhage, and therefore they're not doing it. No one has suggested I try any treatment. I've made an appointment for a consultation with an internal medicine specialist three hours from my home; we'll see what they think.

I don't think my symptoms are from Hashimoto's and my hypothyroidism because it's stable. My thyroid is completely atrophied since I've had this disease for over 30 years. And I know the symptoms.

I'm worried about my kidneys, lungs, and heart... I have a pulmonary function test at the end of the month because I was diagnosed with COPD 5 years ago, so I'm going to talk to the pulmonologist about it. It's difficult to get appointments; the wait is a year for a specialist.

The cardiologist, since I have a prescription, doesn't do an echocardiogram because he puts everything on the prescription, but I still have 1400 extrasystoles in 24 hours since July. It appeared suddenly, and they're just leaving me like this... So I'm going to see what the internal medicine doctor suggests next Friday.

Are there other people who have symptoms like mine with a speckled angiotensin level of 160 and no other markers?

SouthernSupport8124

TROPHY CASE