Living with Sarcoidosis: Tips and Support

Anyone else feeling under the weather?

I know a friend’s mom dealt with something similar—some kind of shadows on her lung scans.
She was put on corticosteroids—Prednisone and some other one, I can't recall the name right now... feeling a bit foggy since I've actually been on them myself before.🙄

Yvette said:I know my friend's mom dealt with this—some kind of shadows on her lungs.
She was on corticosteroids—Prednisone and one other, I can't remember the name now (feeling pretty spacey since I went through it myself🙄

I have this buddy... they just found out two months ago, he's only 34... I've been reading up on it online... he's feeling pretty rough and isn't exactly doing great...
I really want to wrap my head around what this actually entails...

I honestly thought I was all alone here 🙂 .

I actually posted my symptoms over in the Systemic lupus erythematosus thread—since they're all autoimmune issues and the symptoms pretty much overlap anyway.

The weird thing with my situation is that my ACE test came back negative—my eyes are fine, liver’s good too. Local doctors here in my hometown initially diagnosed me with hilar adenopathy in my lungs, but then once I got to a specialist in Washington, D.C., they basically debunked that.

So, everything else is still just sitting there in the "maybe" pile for sarcoidosis.

Look, I know it’s hard to give anyone straight answers when I’m out here fighting my own battle with Systemic lupus erythematosus, but I’ve been wondering about how things work with Multiple sclerosis. How heavy does it actually get? Like, what’s the real danger level here? And what else triggers those flares... how do you guys handle the stress?

Usually, it hits the lungs first, then the eyes, maybe the liver... in my case, it was my joints.
Like I said, the pain was brutal—plus feeling wiped out constantly and dealing with tachycardia (that weird sensation where you feel like your heart is skipping beats).

I’m not sure what else triggers a flare-up, but I know stress is a total nightmare for this. I notice as soon as something stressful happens, the pain in my hands just spikes immediately.

As for how dangerous it actually is... my primary care doctor basically told me, "Well, if you're going to have one of these illnesses, at least you've got this one."
Pretty colorful way to put it, right?

Susan Lewis79 said:Usually, it hits the lungs first, then the eyes, the liver... for me, it was my joints.
Like I said, the pain was brutal. Constant exhaustion, racing heart—that feeling where you think your heart is actually skipping beats.

I’m not sure what triggers a flare-up, but stress? Stress is a total killer. I notice that whenever something stressful happens, the pain in my hands just spikes immediately.

As for how dangerous it is... my primary care doctor basically told me, "If you had to pick one of these illnesses to deal with, this would be the best one."
>>That’s a hell of an image.

Oh, so she "comforted" you by calling it the "best"... seriously? Like, where else are you gonna go, a skipping heart and constant agony? Great advice.

--only___me-- said:So, how bad is it really? My GP actually told me, "If you absolutely have to deal with one of these conditions, this is the best one to have."
That’s one hell of a way to put it.

They usually group sarcoidosis under autoimmune diseases, even though experts aren't 100% sure it fits perfectly there. But honestly, if I’m forced to pick an autoimmune disorder to live with, I agree with your doctor—I'll take sarcoidosis any day.

I was on Medrol for a few months, and so far, my symptoms haven't come back. For some people, they stay away for good, so I'm really crossing my fingers that I'm one of those lucky ones.😉