Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

SpoonieLuna

Updated 1y ago

Recently Diagnosed with Sarcoidosis: Seeking Advice

Hi there, I’m 24f and recently diagnosed with sarcoidosis by my rheumatologist based off of blood work. Are there other tests I should have done to confirm? I’d love to hear about your journey.

Can you help? Connect today

avatar

Jenh

2y

What kind of sarcoidosis? I have Pulmonary sarcoidosis, I needed a lung biopsy to diagnose that. What kind you diagnose from the blood?
avatar

Drama24seven

2y

I was diagnosed by biopsy of some big red nodules on my legs otherwise I would have had to have a lung biopsy.
avatar

Jenh

2y

I had lung biopsys, it’s been scary during Covid for sure. With pulmonary sarcoidosis I’m a nervous wreck. It hasn’t been active in years, but there is permanent damage. When it was active I was mainly feeling exhausted, I was about 30 raising my baby and wondering why I was struggling so much. The exhaustion was debilitating
avatar

kastou

2y

I can relate
avatar

SheriLeigh

2y

I have pulmonary sarcoidosis and was diagnosed by a lung biopsy. If you have any questions ask. Hope you are feeling well. 🙂
avatar

Cat1

2y

Is it normal to Lose so much weight . I have pulmonary. I don't have trouble breathing. My Ace is low 27. I have had a swollen lymph node under my neck going on 2 years. PET scan showed that being clear. Biopsy showed granulomas on lungs. I'm so tired.But very stressed I loss my mom Thanksgiving. I have no family left. And you know how friends are they are sick of us complaining
avatar

Elaine_L

2y

I was diagnosed via lung biopsy. I have systemic sarcoidosis.
avatar

Jenh

2y

Hi, Elaine_L what else do you have that got you the diagnose of systemic sarcoidosis?
avatar

Elaine_L

2y

They found nodules in my gallbladder and sinuses. Also, I have lung, heart, and skin involvement. I have hearing loss that they feel is associated. Plus food allergies (peanuts and red dye) when I have a sarcoid flair. I doctor with a team at Mayo Clinic.
avatar

Jenh

2y

do you go to this team in person or virtually?
avatar

Karen37

2y

How was you diagnosed with systemic sarcoidosis?
avatar

Alco

2y

Biopsy from my lung
avatar

Kmac73

2y

I had lung biopsy and PET scan
avatar

Nollie

2y

I was diagnosed with pulmonary and lymphatic sarcoidosis in 2018. I had a lung biopsy
avatar

SammyD

2y

You have to have a biopsy. There is no blood test out there that can definitively say your issue is Sarc VS something else. If your doc has made this diagnosis based on a blood test then what they have actually done is taken all the diseases they know of that can cause the issues you're having, run the tests they know that will give them diagnoses, and when they all came back "negative", they decided it must be Sarc because it wasn't anything else. A diagnosis of exclusion isn't a proper diagnosis.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc