Sarcoidosis Support Group
Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.
Hi everyone! My name is Melissa and I just turned 31 this past june. I was having some terrible chest pains about a year ago and I went to my local hospital and they ran a EKG, Blood work and some other test and everything came back normal, they told me that I may have something like acid reflux and was given some meds to numb my esophagus and sent me home. So about a week later I was still having some chest pains and decided to go to another town to another hospital and again they ran a EKG, blood work and done an X-Ray and said everything was normal and thought it may be stress. So once again sent me back home. Well a few days later I was having some really bad chest pains far worse then before so I then went to another hospital same thing happened again with the same test and said that they seen wrong with me. At this point I was getting very frustrated and was tired of going to hospitals and they all saying nothing was wrong with me.
So just a few days later after I went to the last hospital my family doctor had called and said that when I went to the last hospital they seen something on my X-ray that wasn't normal and suggested that I get a CT Scan done to see what it was. So I went and had my Ct Scan about 2 weeks later and it came back that I had 7 nodules on my left lung and said that it may be benign and to retest again in 6 months. So 6 months had went by and I went and had my follow up CT scan and it came back that the nodules were still there and said that it may be sarcoidosis. I was truly devastated and started crying when my doctor told me that because my aunt has chronic sarcoidosis and I see what she has been thru and what she deals with on a daily basis.
So as of now I'm waiting for my Doctor to call with an appointment date for me to go and see a Pulmonologist and see if that's exactly what I have and what the next step in this journey is.
My doctor told me that it wasn't the worse news because it could of been something much worse such as cancer which is very true however I already have chronic hidradenitis Suppurativa disease which causes extreme pain every day of my life for the last 7 years and just didn't want to have something else to deal with.
Has anyone else ever been diagnosed similar as me?
So just a few days later after I went to the last hospital my family doctor had called and said that when I went to the last hospital they seen something on my X-ray that wasn't normal and suggested that I get a CT Scan done to see what it was. So I went and had my Ct Scan about 2 weeks later and it came back that I had 7 nodules on my left lung and said that it may be benign and to retest again in 6 months. So 6 months had went by and I went and had my follow up CT scan and it came back that the nodules were still there and said that it may be sarcoidosis. I was truly devastated and started crying when my doctor told me that because my aunt has chronic sarcoidosis and I see what she has been thru and what she deals with on a daily basis.
So as of now I'm waiting for my Doctor to call with an appointment date for me to go and see a Pulmonologist and see if that's exactly what I have and what the next step in this journey is.
My doctor told me that it wasn't the worse news because it could of been something much worse such as cancer which is very true however I already have chronic hidradenitis Suppurativa disease which causes extreme pain every day of my life for the last 7 years and just didn't want to have something else to deal with.
Has anyone else ever been diagnosed similar as me?
I too have relatives with Sarc. Didn't discover that until after my own diagnosis. My second cousin has had it for 25 years. I also had an aunt who had it. She was hospitalized for one month, but afterwards, she did quite well. I hope things go well for us also. I've read that some people can have Sarc once and it never comes back. I've had it for a few years now, and do have good and bad days. The only meds I've taken so far are knee injections for arthritis and antidepressants. My second X Ray showed that the nodules in my lungs were shrinking son I never took oral steroids. I now visit the Rheumatologist once every three months.
Upon closing I pray that you continue to receive good results and if your diagnosis is Sarc, this forum has people who cares. Please keep us informed, Joni