Question

Chest and lungs
1

From X-ray and ct scan radiologist and respiralogist stated certain it was sarcoidosis. Did blood work breathing test etc. Went in for my final appointment for all results and treatment plan.  I saw a different specialist as mine was on leave. I felt she did a poor job felt I had to prod to get info. Then she tells me from me biopsy they ruled out other things but couldn't confirm sarcoidosis . She said they would treat it as sarcoidosis? 

Has this happened to anyone else?

My concern is she did 'nt really go over options. Just said continue with inhaler for breathing and cough. Asked her about fatigue then said prednisone would deal with that now I'm taking this for 3 months with antibiotics and something for acid build up.  Worrying now that what if I made a bad decision as I thought this appointment the specialist would lay out treatment plan options , side effects and best way to handle where I'm at. Sorry maybe just venting. Super upsetting day.  Thanks L

2

Hi my partner has been going through this since january! He is 30 and still getting classed as 'suspected sarcoidosis' he has been on prednislone since march no sign of coming off them and his pft tests are sitting over all at 47% its getting very frustrating now.

I really feel for you as you just want answers and to try get back to what ever normality you can get. Just doesn't seem to be enough answers out there

3

Get a second opinion please! If the specialist didn't go through all the treatment plans . I've been fighting sarcoidios for 30 year's and in the beginning I was treated like you are right now. Prednisone does work for some people but if on high does or long term use can cause more damage

Is this specialist a sarcoidios specialist if not seek one out they are the only ones who know about the dease and how to treat it .

Good luck

Gina