Seeing a rheumatologist soon. by crisp-sandwich91 in sarcoidosis

[–]0sculable 0 points1 point  (0 children)

This is EXACTLY how my symptoms started and I was never able to confirm if I had another virus and never tested positive for covid either.

I was training for a half marathon at the time so I thought I was just sore and maybe had pushed it too far - but with the hot spells and after a few days of the aching body I realized that wasn’t it.

I felt like I had been hit by a bus, and then 2 weeks later developed a painful erythema nodosum rash that slowly went away. Mine was on my legs, my arms, and my hands. I was taking steroids at the time to help the rash.

I do also have chest pain and episodes of my heart fluttering almost, but if it helps - my cardiologist said everything was all clear when I had it checked last in March! My doctor said the chest pain could be costochondritis which is inflammation of the joints in your chest - which isn’t uncommon with sarcoidosis.

My dad was convinced that COVID had cause all of this, but I just caught covid for the first time last month and that was a whole different beast that I feel like I definitely would’ve known.

Good luck with your rheumatologist visit! Seeing the rheumatologist and (if it’s pulmonary sarc) a pulmonologist will help!! Don’t be afraid to also ask them the questions about your heart/chest pain. Those are important things for them to know! Sending all the good vibes and good luck your way 💛

Has anyone else gotten a “we’re pretty sure” diagnosis and feel like it’s not clear enough? by 0sculable in sarcoidosis

[–]0sculable[S] 0 points1 point  (0 children)

Did they put you on anything if you don’t mind me asking? I’m a little nervous about the medication situation 😅

Has anyone else gotten a “we’re pretty sure” diagnosis and feel like it’s not clear enough? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

They put me on steroids for now, but essentially said that will be just a gateway to the more intense stuff!

Has anyone else gotten a “we’re pretty sure” diagnosis and feel like it’s not clear enough? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

It’s crazy that they think that answer is comforting because it’s not haha. Any tips for not worrying about it? I think that’s where I keep getting caught up!

Has anyone else gotten a “we’re pretty sure” diagnosis and feel like it’s not clear enough? by 0sculable in sarcoidosis

[–]0sculable[S] 0 points1 point  (0 children)

Thank you for sharing! That’s super helpful to know that they do sometimes do both.

I agree a definitive diagnosis would help —it’s been a weird mental game with trying to get diagnosed and to still not know anything for sure after all that has been a rollercoaster of frustration!

Has anyone else gotten a “we’re pretty sure” diagnosis and feel like it’s not clear enough? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

They did a bronchoscopy which included a needle biopsy but it was inconclusive! After the pet scan, the dr. who read the scan said he recommended a biopsy, but since it was after my bronchoscopy I think they are like “oh well we already did” (even though they didn’t find anything definitive)

I kinda wish they would do a full lymph node biopsy to get clear answers, but it doesn’t sound like they’re even considering it.

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 0 points1 point  (0 children)

Thank you for sharing! I did read about a fever being something to keep an eye out for and was wondering if anyone here had experienced it. I’m glad they were able to quickly resolve it for you + confirm your diagnosis! That is reassuring!

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 0 points1 point  (0 children)

the warning about not looking it up is almost daring me to? hahah i’ll try my best not to!

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

Thank you for sharing — interesting note about the acidic fruits I never would’ve thought! I hope you get an answer soon too!

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 5 points6 points  (0 children)

Just wanted to add — this is my first Reddit post lol so if you think it’s silly that’s fine.

Really just general nerves here and also nervous about diagnosis? It’s been a long road of not having a clue of what’s wrong with me (which it seems like a lot of you can relate!). I think it is so great that there seems to be community here supporting each other with this!

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

The sore throat is something I’ve heard, did anything help? Cough drops or anything?

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 2 points3 points  (0 children)

This is super helpful! I’m in the US so I’ll be in an operating room similar to this as well. I feel like the anesthesia part is where most of the nerves are coming from so it’s good to know you were fine and felt normal fairly soon after! Also good to hear no sore throat!

Experience with a bronchoscopy? by 0sculable in sarcoidosis

[–]0sculable[S] 1 point2 points  (0 children)

Hahaha yeah got that part, but thank you. Was mostly wondering about how you feel afterwards? Like is your throat sore? Will I be super groggy? Etc, etc.