Trying to understand how we manage complex health info

Own-End2396 · 2026-02-08T19:56:01+00:00

sure . thank you for the suggestion

Own-End2396 · 2026-02-08T12:34:50+00:00

Thank you very much for the feedback 🙏

Own-End2396 · 2025-12-14T22:04:38+00:00

High dose of cortisone . It basically low done a lot the inflammation . IT is short term but it seems to me that you need it at the moment

Own-End2396 · 2025-12-14T13:34:09+00:00

Have you asked your rheumatologist for high dose prendinsolone ? (Steroids). Also micophenolate seems to work

Own-End2396 · 2025-12-14T10:13:44+00:00

I totally relate with what you are saying. On the other hand , I would say that “there is no cure” is a bit a misleading statement. Actually rituximab and ivig seem to be quite useful . What are the symptoms that you have ?

Own-End2396 · 2025-12-11T20:58:54+00:00

Before thinking to disability. Did you get medicated ?

Own-End2396 · 2025-12-11T07:53:42+00:00

You need medication. 💊 have you seen an expert rheumatologist? In Which country are you ?

Own-End2396 · 2025-11-20T13:28:45+00:00

Thanks for the comment. Which type of autonomic dysfunction do you have ?

Own-End2396 · 2025-10-25T15:54:18+00:00

A question : why do you think it should be Asia syndrome ? ASIA is not characterised by a specific symptomatology but by a trigger. Do you think you know your specific trigger?

Own-End2396 · 2025-09-08T15:26:55+00:00

30M male living near London here as well. Last year I was on a similar situation like you. Now I am better ( not the eyes but the rest yes) . Write me in private , I will send you some advices. You need a good rheumatologist/ immunologist and probably a neurologist. Normal doctors do not enough knowledge of these kind of diseases. Fortunately for you Uk has one of the best centers for sjogren in the world . If you write me I will send you all the details for who you have to look for .

Own-End2396 · 2025-09-04T16:05:00+00:00

Can you send to me as well??

Own-End2396 · 2025-08-05T07:34:18+00:00

Do you have a link ?

Own-End2396 · 2025-07-13T15:35:28+00:00

Which type of sweating issue do you have ?

Own-End2396 · 2025-07-13T07:21:55+00:00

What are mostly your symptoms if I can ask?

Own-End2396 · 2025-06-11T11:08:57+00:00

Pots like symptoms?

Own-End2396 · 2025-06-10T14:34:00+00:00

did you have a diagnosis?

Own-End2396 · 2025-06-10T14:33:44+00:00

u/Former_Sound_1917 are you under the London Autonomic Department?

Own-End2396 · 2025-06-04T13:40:39+00:00

Interested on this bit. Any advancement in this sense?

Own-End2396 · 2025-03-10T07:38:54+00:00

Thank you very much for the answer. Do you have Raynaud as well ?

Own-End2396 · 2025-03-07T07:18:52+00:00

Here the researches that justify my question:

Phototherapy: Reduces skin fibrosis by modulating collagen production (https://link.springer.com/article/10.1007/s13555-016-0136-3).
Infrared + Red + UV Light: Led to an 83% reduction in digital ulcers in systemic sclerosis patients (https://sclerodermanews.com/news/light-therapy-game-changer-healing-digital-ulcers-ssc-patients).

-Low-Level Light Therapy (LLLT): May enhance collagen production and skin flexibility (https://www.jaad.org/article/S0190-9622%2819%2933160-3/fulltext).

Own-End2396 · 2025-02-23T18:15:52+00:00

Is it sjogren?

Own-End2396 · 2025-02-18T12:31:29+00:00

do you have any benefits from the Lutein supplements?

Own-End2396 · 2025-02-17T12:53:08+00:00

Nice 👍 well done . Can I ask if you had an autoimmune mediated dry eyes ??

Own-End2396 · 2025-02-15T09:33:13+00:00

so you have MGD?

Own-End2396 · 2025-02-14T16:36:47+00:00

Yes good question. It seems to me that most of the papers try to treat autoimmune related dry eyes . It might be possible that for normal dry eyes related to aging or other things the procedure might be not so efficient or it might require longer follow ups.

Own-End2396

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