Anyone with diagnosis of sarcoidosis?

Posted by bethie777 @bethie777, Oct 29, 2023

2yrs ago dx with psoriasis. Finally seen at Mayo-new treatment plan. Also developed dry, non-prod cough. Seen 11 mo later by pulm, bronch done. No + biopsies. Based on symptoms started on steroids(1yr ago). Cont w/occas cough, SOB,fatigue & wt up 30#. CT show sarcoidosis but not as significant as my clinical symptoms. Will have a lung test to determine if we should tx asthma more agressively or sarc. Anyone have a story like this? My body &brain want to return to previous self.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@peacetoyou

Hello. I had sarcoidosis of liver and spleen in 2022. I have chronic fatigue, a dry non prod braying-type cough that I attributed to GERD or tissue disease. My abdominal area looks swollen; Honestly, it looks like I'm 23 months pregnant. I gained weight. I lost inches but not abdomen.

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@peacetoyou Does your doctor know about these changes? I would highly recommend that you call for an appointment.
Can you do that? And let me know what you learn.

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I was just diagnosed with sarcoidosis, anyone else dealing with this illness I’m trying to learn as much as I can been working with some really good specialist right now I’m feeling good. It’s a little scary though.

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@tassie21

I was just diagnosed with sarcoidosis, anyone else dealing with this illness I’m trying to learn as much as I can been working with some really good specialist right now I’m feeling good. It’s a little scary though.

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Hi @tassie21 There are several members in the forum who are dealing with a sarcoidosis diagnosis. Because this inflammatory disease can affect various organs in the body, I’d like to connect you with members who share your similar story. Would you mind telling me a little more about your condition please?

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I ask for support from anyone who has been diagnosed with the same disease, especially if the sarcoidosis virus has spread to the nervous system and half of the face has been paralyzed. Is there any hope of treatment and a return to normal? Please help morally.

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@sanae96

I ask for support from anyone who has been diagnosed with the same disease, especially if the sarcoidosis virus has spread to the nervous system and half of the face has been paralyzed. Is there any hope of treatment and a return to normal? Please help morally.

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@sanae96 Welcome to Mayo Connect, a community of patients and caregivers who support one another in our health journeys. It is scary to be diagnosed with a new and rare condition, which is why people often come here for answers.
First, a little about sarcoidosis - it is an autoimmune condition, where cells in the body attack each other causing some of the symptoms you describe. There are treatments available to relieve many of the symptoms.

Since it often affects the lungs, I have included this link, where you can learn a little more about it.

https://www.lung.org/lung-health-diseases/lung-disease-lookup/sarcoidosis/learn-about-sarcoidosis

Here are two discussions on Mayo Connect among people who have Sarcoidosis:
https://connect.mayoclinic.org/discussion/anyone-with-diagnosis-of-sarcoidosis/

https://connect.mayoclinic.org/discussion/sarcoidosis-treatment

I hope this will connect you with others who have the same experiences as you, and can offer their support.

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