Sarcoidosis

I have a friend with Sarcoidosis in Auburn, Ca.

Hello Denise,
I have a family member with it. It took years and lots of test to diagnose. He's 53 now and still working. I understand it has lots of different symptoms for different people. I have M.S. and the same is true for that as well. From what I have read and he has mentioned Migranes are common with Sarcoidosis. He does miss a little bit of work form it but, they don't know he has it. For insurence reasons I believe. I am in the process of searching the internet to find out more like I did when they DX'd me. I'll help ya look for info. if there is anything you have ?'s about. I love to do research!
Roxi

Hi Denise,

I have it in my lungs. The first thing that I would tell you is do NOT freak out! It sounds very scary, but for some people like me it just goes away! I went to the doctor after having trouble breathing at the end of the day as I was laying down to go to bed. They did an x-ray and a bronchoscopy and verified that it was not cancer which was a great relief since I had just given birth to my first son who had medical issues of his own. I just had a few, (3 at most) episodes of breathing problems and then the symptoms went away. It has been a couple of years and I have not had any more problems so far. I go in for a check up where they check my oxygen level (98%) every 3 moths or so and that is all. I just gave birth to my second son and had no problems. I hope that your case ends up being as mild!!

Maybe try to start eating the anti-inflamitory way. I think Dr. Weil has something published about it & I'm sure there are more.

Go to NAET.com And read about holistic treatments and cures. Look for a NAET practitioner in you area. Borders carries her books.

My good friend's doctor has gone from a RA diagnosis to probable sarcoidosis one. She suffers from swollen and painful wrists - much like carpal tunnel. She has gotten cortisone shots in her wrists and that helps but they don't last very long. So far she has no lung issues. I can't remember the other common area of affliction, but she doesn't suffer from that either.

What are your symptoms?

My husband was diagnosed with Sarcoidosis about 21 years ago. It was really bad at the time, was in 4 organs - lungs, liver, skin and eyes. Very scary for a year or so. Lots of problems and symptoms.

He had over a year of Prednisone, moving down in dosage. He still has yearly lung function tests and has had Pneumonia (perhaps because of the damage to his lungs)

But for the most part he is really well now. Even is a jogger and has done the CIM and many half marathons.

What are your concerns or questions?

~T.

Hi Denise:

I was diagnosed with Sarcoidosis in 1992. It was very scary because I had never heard of it and to be diagnosed with like where did this come from? It was a month before I was diagnosed and I lost a total of 40lbs in that month.
Couldn't eat or drink anything; just to put something in my mouth made me throw up (sorry). I had a cough that wouldn't stop and this was very frustrating. I was wasting away. Thank God I was finally diagnosed and recieved the proper meds and attention to get this taken care of.

There is no cure, I was prescribed Prednisone 60mg and this put on the weight.

I am happy to say that for the past 5-6 years, I am not on any medications and am doing well.

My Doctor informed me that some people don't use medication for long and their Sarcodosis will be stable, then there are others whose symptoms need to be on meds for ever.

My left eye, lungs and liver was affected. I don't know your symptoms, however, your Dr. should have had a series of tests done such as PFT (pulmonary function test) labs to check you ACE (liver test). All of these are important to do. Check with your and let him/her know of your concerns and hopefully you can get the medical attention you need. I assumeing it is you, there is not much noted to imply this.

Best Regards,
A. C.