sarcoidosis

I've just been diagnosed with sarcoidosis .

For those of you probably most who haven't heard of it it's a genetic disease which can affect any organ but usually starts in the lungs.

Tiny granular / lumps form in the organ(s) and degenerate its ability to function.  It can't be cured and they don't know what causes it.

I have the acute version but it's not plain sailing.
My joints in my arms , hands , legs and feet become inflamed basically rendering me crippled.

I've gone from a 30 year old to a 90 year old in the space of a week. 

I use an anti inflammatory drug so I can get about.
Most days I can't leave the house. 

I passed out in my living room and was taken to hospital where I stayed for a week. That's how I found out. 

My question is has anyone had any experience with this disorder and if so can they offer any advice. 

This isn't a sob story and I will beat this thing I'm convinced it's caused by eating the crap we do. 

reply to post by tombangelta


My brother was diagnosed with this OP. His is, as far as I know in his lungs. He deals with a lot of pain and fatigue, but refuses to be put on the steroids and such that the doctors want to prescribe..

It does seem to be one of those diseases that the medical community hasn't a clue whatsoever as to it's cause or possible treatment.......

Don't give up on it.

reply to post by seeker1963


Sorry to hear about your brother.

Luckily mine is not in my lungs. Although I have have symptoms.

I have thought about the steroids , just a short bout may be 
Enough to get me back on track. 

reply to post by tombangelta


Do what you have to do my friend. My brother did take the steroids for a few months, but then he weighed the benefits versus the side effects and stopped taking them.

I wish you the best in your fight....

reply to post by tombangelta


Sorry to hear about your health problems.
I don't know anything about the disease, but wish you well...and hope you have the strength and will to keep fighting.
A quick search showed that the disease can go into remission....and I hope that happens with you!!

ETA for others like me who had no idea about this disease
en.wikipedia.org...

I was diagnosed lung sarcoidosis 10 years ago. I went to doctor because i had pains in my lungs. In x-ray they found a dark spot in my lung, so the first thought was i had a cancer. Well, it turned out to be "just" sarcoidosis. Because my pains were random and mild and didn't affect my life, i wasn't given any medication - i was only advised to go to control every now and then. Soon after sarcoidosis went into remission and luckily have been so ever since.

Btw, my mother had also a lung sarcoidosis at the same age as i. Hers also went to remission.

I wish you strenght with this rare and mysterious disease. Let's hope for remission in your case too.

reply to post by tombangelta


Hey, we can learn a lot from sob stories, so there's nothing wrong with them. I hope somebody can come up with some information that can truly help you.

This disease sounds harsh, man. I'm wishing you all the best.

reply to post by RocKukko


Your input is much apreciated .

Good to know it went away

Hope mine does the same soon.

A friend of mine has it. I tried researching the disease and found little other than information about what it was. It doesn't appear that much is known about the cause, there is a little speculation but that's about all I found. Not really any natural medications for it either. I can't see any evidence of a relation to diet but it may be one of those diseases that may be from chemicals in food. I've read maybe ten articles on it but nothing really pops out as to it's cause or treatment. The number of people with it is increasing it seems but that may only be because they have found how to identify it. It could have been thought of as another disease in the past.

I;m sorry to hear that you have it OP. My friend suffers with it everyday. I wish I could help but I just can't find enough relevant information on it to even make a logical guess as far as trying something to help. Cross reactivities in foods can cause internal inflammation. But what cross reactivity I do not know.