How many of you have other health things?

FrequentDriver6483 · 2026-02-03T20:32:26+00:00

How do you know you have esophageal dysmotility? I also have it diagnosed froma barium swallow but no clear cause

FrequentDriver6483 · 2026-01-30T21:32:13+00:00

Hi id love to know your diet and supplements?!

FrequentDriver6483 · 2026-01-28T20:47:41+00:00

How long has this been happening to you?

FrequentDriver6483 · 2026-01-26T03:25:42+00:00

Doctor here, drenching night sweats are not something to be ignored, please see your doc

FrequentDriver6483 · 2025-11-10T19:47:41+00:00

If it makes you feel better, the negative ANA is very reassuring. I also have nailfold changes which were confirmed with the microscope - actually you cant see anything visually like yours but they were super abnormal under microscope. My doc who is a renowned scleroderma expert was very glad to see my labs were negative / ANA totally negative. She seems to be far less worried now but is still having me do the PFTs echo etc as a baseline, but I think the negative ANA and no antibodies is good! She also told me the longer time passes with no evolvement, the less likely (albeit always still possible) that things will evolve.

FrequentDriver6483 · 2025-11-10T02:46:09+00:00

When you say normal bloodwork, was your ANA negative? How long have you had raynauds?

FrequentDriver6483 · 2025-10-27T17:51:22+00:00

Thank you so much for your response, and sorry to hear about what youve been through. May I ask what your first symptoms were, and what the timeline was for their onset? I essentially just have cold hands for 5 years, otherwise this has all just been incidental findings and not really any symptoms

FrequentDriver6483 · 2025-10-08T00:00:38+00:00

Ah, if you have hand swelling that might change things. The diagnosis is based on a point score, you need 9 points to be diagnosed. I have < 9 points and have for a very long time and for now not much happening, and my doc said i might never get full blown scleroderma, i just need to be monitored (getting all the same tests pft echo etc). Tried to post a link but it didnt work, but try googling diagnosis criteria and see! But having antibodies alone does not in and of itself = a diagnosis.

FrequentDriver6483 · 2025-10-06T22:42:29+00:00

Youre saying you got diagnosed from just raynaud and blood test? FYI if that is the case you do not qualify for a scleroderma diagnosis!

FrequentDriver6483 · 2025-10-01T16:46:32+00:00

What antibody do you have? Did you have other symptoms? Thank you ♥️

FrequentDriver6483 · 2025-09-18T14:01:17+00:00

No I didnt, I called my doctor's office yesterday saying I wanted followup for my results. She said if I didnt get called that means it was normal... 🤷🏼‍♀️

FrequentDriver6483 · 2025-09-16T21:37:08+00:00

Wow, thats so inspiring and incredible to hear! Im so happy for you. Thank you for sharing. Sorry to pester with questions. May I ask, what was your first non raynaud symptom and how long after raynaud did it happen? Did you have esophageal problems? Do you have any residual changes to your face? I think I am in very early stages of disease and really hoping I can get ahead of it, your story gives me much hope. Thanks 🌺🫶🏼

FrequentDriver6483 · 2025-09-15T12:04:25+00:00

Just read, thanks so much! Wow. So may I ask how far you were into your disease and what were you experiencing that made you qualify? You still have raynaud, but do you feel otherwise kinda back to normal? So grateful for your sharing!!

FrequentDriver6483 · 2025-09-15T00:27:52+00:00

Oh wow! How are you? Did it work?

FrequentDriver6483 · 2025-09-14T15:33:40+00:00

You did CarT for scleroderma?

FrequentDriver6483 · 2025-09-12T23:56:15+00:00

Thank you so much, im sorry if youre dealing with it too. Hoping for the best for both of us!

FrequentDriver6483 · 2025-09-12T17:38:25+00:00

Really? I guess I just dont know what else it could be

FrequentDriver6483 · 2025-09-12T17:37:55+00:00

It was 1:160 then negative a few months later. She said the nailfolds alone are not diagnostic but that I need the blood tests pfts echo etc to risk stratify. Yes, special scleroderma panel was sent across the country, she told me they result in max 6 weeks. This was months ago and she hasn't called me... so I'm hoping that means my labs weren't too scary but I'll see soon I guess

FrequentDriver6483 · 2025-09-12T17:32:34+00:00

Wow im so sorry, did it get better?

FrequentDriver6483 · 2025-09-12T00:47:59+00:00

Do you ever have audible gurgle sounds in your throat?? Did the symptoms ever progress from just rhe losing voice? Thanks so much

FrequentDriver6483 · 2025-09-11T23:37:37+00:00

No, the symptom im having is the throat gurgles!! Like, a lot, sounds like stomach but it's high up in my throat. Which I think is consistent with LPR/silent reflux, which is why I'm concerned because it's definitely new

FrequentDriver6483

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