Neurosarcoids

Hi. How are you? My first symptoms were very servere pain in my joints. (Wrists elbows knees etc). My feet also started to swell. To the point that i had to wear flip flops as my shoes would not fit. Then I have very bad shortness of breath. Also had problems with my eyes watering excessively and blotches on my skin that looked like bruises. I was only after having my son. And i initially thought it was something to do with the pregnancy but when i went to the doctors they started doing tests. Snd it was a while until they diagnosed me. The swelling of the feet and the blotches on my skin disappeared. My eyes still water occasionally. And the pain is gone in my joints. But the sarcoidosis caused scarring on my lungs and I still have problems with my breathing. It's been really bad the past few weeks.

I started with a dry cough which I had for eighteen months. Then was getting very breathless and difficulty climbing stairs. I was taken into hospital when I had erythema nodosum severe swelling of the legs. Once I had cat scans and x rays they found all my lymph nodes enlarged and also in my lungs. I had one removed and the biopsy proved sarcoidodis. Have been on prednisolone for a year now. But always seem to be so exhausted. Just take each day one at a time now. Hope you feel better soon. Take care xxx

Hello, I was diagnosed with sarcoidosis in August. It was found by accident after an x-ray I had of my ribs. I have had a pain on my left side near my ribs for the past few years. The X-ray came back showing some nodules on my lungs. I then had a CT scan which showed granulomas all over both of my lungs. I started to see a pulmonologist who wanted me to get a follow-up CT scan three months later. 3 months after that I had the second CT scan and it showed that it was spreading and getting worse. So I then had a lung biopsy to confirm that it was sarcoidosis.

The biopsy confirmed the sarcoidosis and now I take prednisone to try to help control it. I will be getting another CT scan in November to see if there is an improvement.

I also had really bad joint pain in my ankles ,knees, wrists, and thumbs. But I thought my joint pain was related to the weight I had put on after my pregnancy.

The whole process was pretty scary but I'm glad to finally have a diagnosis. Hope all is well with you.

I had 3 days of repeatedly stop breathing 4 - 6 times a day starting on a friday, My oldest daughter took me to the doctor on Monday, they tried breathing treatments & made it worse, sent me to have an emergency CT on my lungs, it came back showing the pea size tumors. Results came by & was immediately sent to a Pulmonary specialist. Within a week I was at a specialist at Barnes Hospital & had PFTS aka Pulmonary Function test. I also had a biopsy & showed the lymphnodes around my lungs & heart was severely enlarged & squeezing my heart.