Sarcoidosis

[martinpatricia811]

Hi I have Sarcoidosis and was hoping to speak to somone with the same condition x

[Caspiana]

Hello and welcome. 👋I don't have the same condition as you but I am sure there are others with your condition here. I'm glad you found us. 🙋

[MELNEL]

Hiya 😊 if you put Sarcoidosis in the search field you will find a community of it were you can join. Hope you get some answers and advise in the community 😃. Best wishes and welcome 😊

[watergazer]

Hi and welcome Sorry can’t help

[Mavary]

Hi martinparicia My Mother had Sarcoidosis in the lungs. You can also get lumps over your body caused by it. But she only had it in her lungs. She was quite poorly with it. They put her on steroids and told her that she would take them for the rest of her life. But Mum being my Mum was determined to come off of them. She did eventually get over it and went on to live until she was 87.

[martinpatricia811 in reply to Mavary]

Aww that’s good don’t think it will leave me I am on oxjen and auntie immune tabs

[Mavary in reply to martinpatricia811]

Don’t say never. They told my Mum she would never get over it but she did. You can always hope. X

[martinpatricia811 in reply to Mavary]

I really hope so mate it’s a horrible disease as you well no

[sunrise2801]

Hello, I was diagnosed with Sarcoidosis at age 32, (I am now61)It was quite a shock at the time, I could not just google it or search online. It didn't exist. I had to wade through medical journals, to find out what Sarcoid was. All that time ago. the information highway didn't exist.I was lucky in a way because my Gp had seen a case of Sarcoid in one other patient he had been practicing for 45 years.

I presented with flu-like symptoms that had been going on for a while, I of course thought it was flu. I then had a presentation of huge lumps on my shins, ankles several of them, at first I thought they were insect bites, they were quite painful. I also became a bit wheezy but I just thought it was my asthma, now I was concerned so I booked an appointment to see my doctor.

At my appointment I explained what had been going on, he seemed very interested in the lumps on my legs, (they stood proud at about nearly 2 inches deep and were rock hard by now. He examined me thoroughly. left the room for quite a while, then he got back and told me I had to go straight to my local hospital chest clinic where they would do a test for Tuberculosis. He also told me it was to discount it as he thought I had a condition called Sarcoidosis.

It turned out after chest Xrays and ct scans lots of different blood tests I was diagnosed I had to do lots of lung function tests, I was told by a specialist I would be very sick for about 2 years, by this time I was seriously having trouble breathing. I told the consultant I didn't have time to be sick as my hubby was n the Royal Navy I was the only person looking after my 3 children. I did everything I was told to do, I cleared the Sarcoidosis within 10 months which astounded the specialist, I was very determined, I have had long term issues with lungs and joints, it does depend on the extent of the sarcoid, mine was extensive lots of scarring of the lungs. On the positive, I am here to tell the tale. My advice is please don't turn to dr google because you will scare yourself. ask questions of your care givers, write lists of questions make sure they listen to you. I think there is now a 10-year follow-up on patients with sarcoidosis, I truly hope you get all the help you need with your diagnosis and how to live with it. I'm sorry this is long-winded but I wanted to put some context on to my diagnosis.

I am always happy to chat if you need it. stay safe and take care of yourself

[martinpatricia811 in reply to sunrise2801]

Aww thank you for that I can image ther wasn’t much information then because ther isn’t an aurful lot now I have had this now for 4years been on steroids for two of them I am now on And see immune medication for the rest of my life they said I am also on oxygen get very breathless and cough all the time carnt do much because I carnt breath I’m glad it has left you I have spoke to two ppl now and it has left them so fingers crossed my sister has it also xx