Sarcoidosis :: What's Next?


Mar 18, 2015

I have been very unwell for sometime now and have had numerous tests for different things including TB and  now Sarcoidosis. Reading what people are saying on here is very uplifting.

When I went to see my consultant again a couple of weeks ago I still did not have a clue what was wrong with me. He then said ok let's go with Sarcoidosis, then you ask what is this and he comes back with Granulomas, small tumors on you body organs. Ok here goes I then ask is this a condition for life will it go away? He said that we will discuss this when you come back next time after putting me on six steriods a day, which I have been taking and have now put on 5 pound in weight.

I am a very happy go lucky lady and will be 49 in May.

The posts that I have read in most cases have been positive.

It is now 3.54 in the morning and not for the first time I am waking up in the middle of the night for a couple of hours then getting up and going to work. Will the mortgage get paid if I don't go to work and would I be covered by critical illness. Such worrying times.

View 5 Replies



Advertisement

Sarcoidosis :: Anyone Get A Very Hot Head?

does anyone get a very hot head 

I feel dizzy and hot but when I put my glasses on the top of my head and take them off it's just wet having to wash my hair every day sometimes morning and night.

View 1 Replies

Sarcoidosis Along With Fibromyalgia And Asthma

Just been diagnosed with sarcoidosis of both lungs. Also have Fibromyalgia, Asthma and various other medical problems.

Had bronchoscopy and biopsies on Tuesday, felt every one taken from my right lung was in complete agony. Had x-ray 2 hours later and was told there was no pneumothorax and sent home.

On Wednesday I was in a lot of pain, but as I was seeing my consultant on Friday decided to wait to see him and it had subsided somewhat by then. Told him about the pain and he sent me for another chest x-ray which confirmed I had a pneumothorax, which he said would heal on its own.

I have to go back next week for another x-ray to see if it has healed.

He said that he wouldn't prescribe steroids at the moment and will be sending me for another lung function test in the next 3-4 months to see how things are going.

Just feeling very tired and slight pain from the pneumothorax.

View 1 Replies

Treating The Autoimmune Part Of Sarcoidosis

Has anyone looked into treating the autoimmune part of sarcoidosis, if so, what was the outcome?

View 17 Replies

Sarcoidosis :: Crazy Itching - No Allergies

I have lumps in my lower legs, shortness of breath (COPD) that is getting worst, even though I haven't smoked in a year. My eyes are not affected, just had them tested. I have been on leflunomide 20 mg for 2 months and lumps are going away. Doctor also put me on O2 at nighttime. My entire itches and that is driving me crazy, I take a baths only every 3 days, and have used all kinds of skin cream, nothing works. I have itches for 5 years, not allergies, that has been ruled out. Sometimes I itch worse than other times. I have also had all kinds of blood tests and the results always come back being OK.

View 11 Replies

Small Boil On The Inside Of My Nose Led To Sarcoidosis

Well I had a small boil on the inside of my nose for months and it just wouldn't go away. I visited my NHS Dr who prescribed some cream, nothing happened - he advised to continue using it and suggested perhaps getting it cut off. Anyway I visited the Dr at work who advised getting it cut off which I thought would be end of it. But to my dismay they did a biospy on it and found out it was Sarcoidosis. My mum has this so I was aware of it. I was devasted. This followed with CT scans, lung test, blood test which confirmed Sarcoidosis on the lungs and enlarged nymph nodes. After a long consultation it was decided not to treat it yet as I had no other systems. But a couple of months later I developed a cough, two months later I am still coughing and on exertion (netball albiet quite a bit of running around) I end up having a sort of ashtma attack. Anyway to cut a long story short this is all related and have been prescribed steriods and some other stuff to counteract the side effects. I am really reluctant to take them but after reading the different views on this site with all the different effect I feel I should start taking them (waiting for the NHS to reluctantly prescribe them) before it gets worse. I am wondering now if I have had this for ages as the symptoms of tiredness, aching neck and shoulders I have always had but just thought it was me. My mum was diagnosed 20 years or so ago and it has only just flared up again but in the bones of her ankle. She has trouble breathing which they have said is asthma...

View 1 Replies

Sarcoidosis Stage 3 Is Back After 13 Years - Relapse

I recovered from stg 3 Sarc (in lungs, lymph, joints, sinus) 13yrs ago, after 5yrs of illness and 2yrs of steroids.

I now have Erythema Nodosum (sp?) - red painful bumps on lower legs.

Research suggests that 'EN' is associated with a specific version of Sarc, Lofgren syndrome, which is usually resolves quickly and without treatment.

I'm scared to go to the Dr, as I don't want to face the tension & round of tests to exclude a Sarc relapse. It's not something I want to go through again...

I wonder if it's very likely for a relapse to come with a whole new presentation of the Sarc? Or is it unlikely to be sarc, as I never had EN the last time?

Does anyone have any experience or advice which may help me decide what to do?

Best wishes to all who are currently battling with their Sarc, I truly understand your pain and your exhaustion. I was not expected to recover last time - but I did.

View 4 Replies

Sarcoidosis :: Caused Enlarged Spleen And Liver

Due to Sarcoid I have an enlarged spleen & liver. It seems that other sufferers have the same problem. Question; has anyone found a solution to this problem. I have not heard any discussion on this topic ever?

View 2 Replies

Sarcoidosis :: Mri Scan - Found 2 Small Nodules In Lung

I had a Mri scan for back pain, result found 2 small nodules in lung. Seeing specialist in July, I get a little short of breath and a little wheezy at times nothing to alarm myself, but I have terrible fatigue also have red lumps on forehead chin and buttocks. Worried this could be sarcoidosis my father had this sadly died 26 years, I have read different views on this being hereditary, so worried seems ages till July I am female age 55 & a smoker, any thoughts ?

View 32 Replies





Copyrights 2005-15 www.bigresource.org, All rights reserved