Just curious how many sarcoid buddies are out there? I was diag. in 92 via lung biopsy. Since has spread into many systems. (nervous, digestive, endocrine, cardiac, pulmonary) I now have many subsequent issues: polyneruopathy, psoriasis, chronic fatigue bouts @ times, hair loss here/there, liver enzymes elevated here/there, adrenal glands not producing Cortisol and low levels of DHEA, chronic sinusitis, many allergies with chronic post nasal drip, joint and body pain. Blah blah blah huh? well...its a nasty disease and just curious who else is out there? Thanks !Kelly
Our daughter-in-law has Sarcoidosis and she is taking Chemo for it. She is also a diabetic so has several items to deal with, but she is still working every day. Takes her chemo on Friday so she can rest on the weekends.
Sorry to hear about your problems with sarcoid. I was diagnosed several years ago after an xray showed hylar adenopathy...enlarged lymph nodes in my chest. Fortunately for me, a lung biopsy came back negative...lymph node biopsy was positive. As far as I can tell, I don't have any symptoms. I used to get night sweats occasionally, but that has gone away since I started taking some anti-inflamatory herbs (turmeric and ashwagandha) and MSM. There is a guy named Marshall on the internet who claims to have a protocol which will cure sarcoid. The interesting thing about it is that he gives all the information for free and isn't trying to sell anything! It is a rather involved procedure that you do at home and will take months to go through...you might want to look into it.
HI WAS just looking to see if anyone else diagnosed with Sarcoidosis.. I have recently been diag a couple weeks ago. I have been being treated for Rhumatoid Arthritis for the last 4 years and doctor was not satified about treatment wasnt responding so he sent me to Cleveland Medical Clinic. Rhumatologist spotted nodules on my liver and brain...they want me to go back and get a lung wash and biopsy. so no treatment yet till all is done. I have diabetes, fibromyalgia, and osteo plus much more. i would love to hear more about this disease.
Is Psoriasis caused by sarcoidosis? If a person has sarcoidosis, will he or she get the other things you mentioned? Where can I find out more about the other diseases that sarcoidosis causes? Does anyone know what causes sarcoidosis?
I don't think anyone knows waht causes it but it is a disease of the immune system I think as the body sets up things and the white cells go there to try and heal it. The best thing is to google it and you will have more infor than you can ever absorb. It is not that common.
hello,my girlfriend here in mich,has just been diag with this and i was wondering,her regular doctor didnt even know about it he said it was too new to him,she had a biopsy of the lung done and they want to do another.but said it doesnt matter mow the noduals are on her heart and lungs,they really told her go home and die,they say she wont survive it,so far she has survived cancer,lupus, and a heart condition.they dont want to do anything ,is this normal?i dont know what to do for her.i read about it on web md and it says only 10 % is really fatal. anyone know something we can do,thank you very much,Dennis.G
I am so sorry that you are all going thru this. I just don't know what the prognosis would be in that situation but there must be specialists that she can consult or are these the specialists. As far as being new, it is not a new disease as far as I know.I don't know what they can do. I can't give you websites to go to because they are not allowed on this forum but I think the internet is your best bet at this time. I would check all the hospitals in the nearest large cities to see if some Dr. might specialize in this or maybe a teaching hospital. Obviously she has a very weak immune system considering the lupus and other problems. Since you didn't mention what type of Drs told her to just go home I would assume it was a pulmonologist and cardiologist at least. I sure wish you both well. There may be a sarcodosis foundation if you search it out. That may be your best bet. I think you both are entitled to some better answers.
As with many diseases, it is thought to be an environmental insult of some sort combined with a genetic influence.
Some of the leading environmental candidates are: a pathogen commonly found in ornamental fish tanks, a pathogen often associated with acne, a mycobacterium not fully identified, and other bacteria. It is probable that some patients might be found to have a variety of indications of prior exposure to such pathogens.
I have Sarcoidosis...was diag in 2003 when I had an abnormal chest x-ray...took steroids at that time and for a few weeks after....no issues with it since...unless some of my chest pain is from that and not my heart problem...
34 years old
Diabetic (insulin dep)
I.H.S.S. with pace/defib placed
Blood Clot (sub-clav)
small stroke 10/05
Hi i have it too..got diagnosised in 2001. I have several nodules and hilar in my lungs. Some have calcified. I get chest pains off and on. And have had digestive problems for years, think its related. Got scanned again in 2006 still the same and hasn't changed. I think i got it in my 20's because of similar chest pain. They thought it was valley fever years ago because of nodule on lung. Scans proved otherwise. They told me i would have to live with it and be glad it hasn't got worse or changed since 2001. I am now 47. Take care everyone!
Sure, but I don't know if it will be of much help to you.
One of particular note is Mycobacterium Marinarum or something like that: its instantly familiar to those who have exotic fish tanks. Another is
a class of propionate bacteria known usually for acne.
Ah, hi, I am new to this site and I thinking it's possible Sarcoidosis, as a matter of fact, I had taken up a hobby with Exotic Fish Tanks over the last year and I wondered if my sickness and symptoms had been connected to the fish tanks in some way and now I am discovering I have symptoms of Sarcoidosis. Isn't that interesting? Well, I'd like to see if anybody can comment on my symptoms being potentially related Sarcoidosis. 8 months, I was diagnosed with Pluerisy and with painful lung inflammation. Since it went away, I am coughing up a greenish/brown bubbly sputum everyday, sometimes feel short of breath, but more interestingly, I have had enlarged lymph nodes in my arm pits since the Pluerisy stuff and coughing began. The lymph nodes we ultrasounded at the breast center 7 months ago and were determined to be non-malignant. But they still feel hard hard and isolated. Any ideas anybody?
Hi hashigirl..u could have it. Did you have any nodules on your lungs? As far as the coughing up sputum i never had that. Have you had a ct scan of your lungs? That would tell alot. I wish i knew where my sarcoid came from. I have had freshwater fish tanks in the past, not really exotic. The doc told me i could have inhaled some toxic chemical not sure though. No one in my family has had it. Neither my parents or brothers or sisters. My inflammation never went away in my lungs. So that is why i get pain on and off. Hope you can find out for sure. Take care
I forgot to mention that my lymph nodes in my chest were enlarged. And i did have shortness of breath when i was first diagnosed. But that shortness went away after a few months.
Ok. Ya, I am finding some things in common between us here. First, I did have freshwater fish tanks, however some of the fish were exotic just due to the fact that were rare and from South America. Second, more interesting coincidence between us is that I was exposed to inhalation of toxic chemicals, cleaning solvents such as bleach and ammonia at onset of symptoms. I always, always, always have wondered if I was affected long term affected by being to accidental inhalation. Everybody thought I was nutts, but I got the pleurisy diagnosis within days of that incident. Also, I came down with a granuloma in my spleen with 6 weeks of that incident. The stuff i am coughing up is starting to clear now and breathing is getting better. I want a lung scan. But lymph nodes in arm pitts are concerning. They were huge at the time of pluerisy and painful, they have shrunk down considerabley since I first noticed them, but I can still feel a small inflammation of both left and right sides