r/sarcoidosis

Hello, pretty new to all of this. I was diagnosed in June following months of unexplained swelling in my neck and lymph nodes. The swelling in my neck has since subsided (not sure about within my chest). I’ve also been struggling with what my doctor thought was a pilonidal cyst. I recently had a cystectomy to remove that and the pathology report came back showing chronic inflammation that aligns with the sarcoidosis. Currently the only doctor I see regarding the sarcoidosis is my pulmonologist. I just feel this most recent finding doesn’t align with what my pulmonologist would deal with normally so I’m sure sure he could help. I was wondering if I’d be better off getting in to see a rheumatologist about all of this? I’ve tried researching online but have come up short. My PCP doesn’t have any clue about my condition so she’s not much help either. I also wondered if this has happened to anyone else? And if so, is this an ongoing issue that will arise in other places of my body throughout my life?

I will try to keep this short but essentially I'm 39 years old and my health has been rapidly declining for the last 6 years. I've lost everything, I can't work, I can't walk independently, I need help from my husband for most things and I had to change how I parent my kids.

I live with a long list of daily symptoms and pain.

after my entire right side of my body went numb, along with my daily symptoms I went to the ER. The neuro had me wait an additional 2 months to get MRIs (these showed lesions in both spine and brain)

Waited another month for lumbar puncture, this showed I had 10+ obands.

The man still didn't believe my symptoms.

Then a few months later diagnosed MS and started me on a DMT.

My symptoms got worse, further MRI showed more lesions and now lung abnormalities.

Paused my DMT. I asked if the DMT could have caused the lung abnormalities and I'm being brushed off.

Waited to see pulmonary dr. He refuses to do a biopsy even though I have at least 7 large nodules in my lungs now. He suggested it might be neurosarcoidosis or sarcoidosis eith MS and to let it run its course?! I said i have no quality of life, and that was shrugged off.

Every symptom I have had these last 6 years have not gone away, I just get new symptoms that compile. I am not being listened to by neuro or pulmonary dr or regular dr. None of my symptoms are being treated.

I'm currently experiencing wicked eye pain, that I know needs to be dealt with and is probably optic neurotis but i feel like I'm living in the twilight zone because even when I have proof things are wrong - nothing is being done.

I don't know what to do. I live rural so we don't have any type of walk in - just ER. I cant get into my dr until the end of the month. My neuro never calls back. I feel stuck. Even with proof, I don't get treatment. I feel crazy.

Please help us its been progressing to this point for three years and is in constant pain

I dont have sarc but a good friend of mine does.

If he has sarc in lungs, lymph nodes, heart... is it more likely for this disease to progress if multiple systems like that are affected?

Can someone recommend a Pulmonologist in Washington or Oregon with experience in Sarcoidosis possibly connected with military service. I would like a review of my medical records and the doctors opinion and possibly a nexus letter for a VA claim.

My husband’s lung function has decreased and his scans show more lesions in his lungs. His pulmonologist is recommending another course of prednisone (he’s been off prednisone for about a year) or starting infliximab infusions. Has anyone had experience with the infusions? Pros? Cons? Did it improve your lung function?