Sarcoidosis Support Group

Hi and welcome: I have sarcoid, which was diagnosed with a lung x-ray and bronchoscopy. I have no pain, except headaches. I do sometimes wake up with them, and the headaches I most often have are in the back of my head at the base. But when I wake up with one, it's different usually. I have had a dry cough for several years and some shortness of breath, and I tire easily and my eyes bother me a lot and I have occasional little pains in my ribs. I do have knee pain when I walk a lot, but I don't think that's from the sarcoid - who knows? No one seems to know much.

hI. I am new here as well. I can tell you my experiences are the headaches ( I wake up with them almost everyday), I also wake up stiff and sore everyday (I usually take a hot shower and pop my first two of the 10-12 ibuprophens that I take per day because I won't take any perscpription meds thus far. I have pain in my feet, worse in my left heel. Pain and tingling in my fingers, shortness of breath. My lymph glands are always swollen. Your swelling does sound more consistent with the RA though. Hope this helps.

Thanks so much Cdlane. I just want to know what it is already!

10-12 Ibuprofens? Doesn't that affect your liver?

I hope you know soon. I know how panicky I was when I just didn't know and they kept getting it wrong.
p.s. I figure the ibuprophen can't really be any worse than getting addicted to perscription painkillers and they wreck your liver too. But no I haven't had any probs. so far with the liver. I had blood tests last month and it was within normal.
And you're right, I need to get my check up with the pulmonologist and find a good primary that understands. I am having other problems now like I had two sarcoid lesions removed from my face and then had my eyes checked and getting glaucoma and he said directly related to the sarcoid. Soooo.........................................

Hey Brooklyn! Get your butt up to Mt Sinai--they have a sarc center there and are the best in town at diagnosis. If you have it--they will find it--no need to fool around with doctors that don't know anything about it. Mt Sinai also runs a sarc support group for us New Yorkers, lots of help to be found there as well. See below:

Good Luck!

The Mount Sinai Medical Center has the largest Sarcoidosis Service in the world. Since the Service’s establishment by Dr. Louis Siltzbach in 1948, more than 18,000 patients with Sarcoidosis have been enrolled. Approximately 40 patients per week and 200 new patients per year seek care from our doctors for their Sarcoidosis. Importantly, in the United States the diagnostic Kveim-Siltzbach skin test for Sarcoidosis is available to patients only at The Mount Sinai Medical Center. While we perform all other diagnostic procedures such as skin biopsy, lumph node biopsy, and lung biopsy, the skin test is diagnostic in up to 80 percent of our patients, eliminating the need for more invasive, uncomfortable, and expensive procedures. There is experience with immunosuppressive therapy for advanced cases as well as with lung transplantation. The Mount Sinai Medical Center is an NIH Center of Excellence for research in Sarcoidosis.

The patients of the Mount Sinai Sarcoidosis Service conduct a very active patient support group. Monthly meetings, allow patients to voice their concerns, learn about new disgnoses and therapy and meet the staff of pulmonologists, dermatologists, ophthalmologists and radiologists who participate in their care. The support group maintains a hotline to answer all questions (212) 241-8733

To SweetBroo...
My sister has sarcoidosis and arthritis in her knees. Her ankles and feet are swollen to the extreme however today the doctor told her she may have thyroid problem that which may help the swelling so be sure you have a blood test to check your thyroids.
She gets headaches some. She has it in her eyes, lung and heart so she has the breathing issue too... but stays positive and that helps her.
Pat

I had had it for years and was completely missed. It was diagnosed by a biopsy for something else. The doc called and said I should have all these other tests which (chest xray, CT, Ace) and those were positive so they did another biopsy to confirm.

I was told it is more a diagnosis of exclusion, meaning they figure out it isn't anything else like TB, lymphoma, other granulomas diseases and then they can diagnose sarc.

Plus once you get one auto-immune disease others usually follow so you could have both as well. I now have 3 different ones all originally from the sarc.

I actually had an open lung biopsy to be correctly diagnosed. It was actually discovered through a chest xray that I was got as I was getting ready for a melanoma surgery. It was first thought that my melanoma had metastized to the lung but after a series of tests and then the lung biopsy I was diagnosed with sarcoid. My pulmonologist put me on prednisone and I stayed on it for a year. Sometimes it helped and sometimes it didn't even begin to help. My sarcoid mostly effects my joints. My hips, knees and ankles are the worst with some severe pain in my thigh area. It doesn't always stay in these places because my arms, elbows, wrists and even thumbs and fingers have been affected. Finally my pulmonologist began thinking that something else might be going on like maybe RA. I was sent to a very good RA who took lots of blood and tested for lots of different things. I was not having a bad flare up at the time but besides the sarcoid showing up he also found that I had Sjogrens Syndrome which also has some of the same symptoms as sarcoid (aching joints, muscles, etc). He also said he belives I have a little fibromyalgia. He prescribed Lyrica and a small dosage of prednisone. I've been taking this combination for three months and finally have had relief. My summer was great. I worked daily in a garden and felt the best I have in two years. I recently had what I call a mild flare up and it may be that my meds need adjusting but I'll find out that when I return at the end of the month. Sometimes I believe that the weather can play a part in a flare up but I don't any doctor will agree one way or another to that. My lungs have only been affected in a small way but I still see my pulmonologist for xrays and breathing test. I will continue to see the RA as long as I have insurance. I don't know what I'd do if I had not been sent to him. Sarcoid doesn't get alot of attention but for those of us who have it, "it is a big deal and controls our life". Sorry this was so long but hope it helped.