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March 14, 2000 - Samantha I have had sarcoid of the heart and lung for over five years. I have had 3 heart attacks, the first when I was 23 (I am now 28). I would be interested in any of the readers experiences and would also like any information on this disease.
March 03, 2000 - Greg The one question I can't find much information on is the chest pain. I'm on prednisone, 5mg, ultram, and oxycontin for the steady pain. I see bits and pieces about "The Chest Pain" but I never read about whys and ideas. I do appriciate these web pages. I have others read them to see that there are others feeling the way I do. By the way I have sarcoid in my lungs. Thank You
February 27, 2000 - Kipy Hi There Everyone, Recently in chat at SarcoidBuddies, we discussed going after Oprah Winfrey to do a show on Sarcoidosis. One of the members of our group got this address for us to all submit our idea and our story to be considered for Oprah to do a show on. http://www.oprah.com/email/reach/email_reach_suggest.html We were thinking if we got enough people to write in with their stories, it will show that we have a story worth telling. It is time that we brought awareness of this disease to the public. There are so many of us all over the world who suffer in silence with this disease. It is robbing all of us of our once vital and active lives. We are subjected to doctors who don't understand this disease and seem to get frustrated and take it out on the patient, which is wrong. If you feel this is a good idea. Please fill out this form, found at the URL above, and pass it on to your friends. There is no need to send a reply back to me concerning this matter. Thanks and Take care, Kipy WSS Chat Hostess of The SarcoidBuddies Chat Room
February 26, 2000 - Karen My husband (45 white) was diagnosed with sarcoid January, 1995. He was first diagnosed with pneumonia that took 4 months to cure. Then his pulmonary specialist wanted to do a lung biopsy. When my husband was told it was sarcoid and not cancer, he was relieved. The only thing his doctor told him about the disease was that it would go away on its own. Sarcoid was rediagnosed this past January, 2000. He has had 4 chest x-rays these past 2 months and looking worse each time. All tests that have been done are as follows: Lung Scan, IVP, upper and lower lumbar x-ray, CT scan of chest and abdomen, pulmonary angiogram, pulmonary function test which reads 72 percent of normal. He was put on 60 mg prednisone for two days 40 mg for 3 days then 20mg for 3 days to where he would stop taking after 10 mg for 7 days. Only after a week of taking these his pulmonary doctor told him to stop. After months of pain in his chest and side. Our family physician gave us the name of a urologist. He had two half-inch kidney stones that he immediately removed by way of soundwaves that blasted them. While on the way home from this, my husband started coughing up blood. He called his urologist and he said there was NO WAY this could happen for us to call his pulmonary specialist. He also said there was NO WAY this could happen and for us to go to the emergency room where he was put though a battery of tests. Lung Scan was done and found inconclusive due to the mass of sarcoid in the lungs. Looking for blood clots in his leg by way of ultrsound, none found, then the pulmonary angiogram when they insert a cather though the groin up though the heart and down to his lungs. There were no blood clots, thank goodness. Then another lung biopsy looking for cancer. After the biopsy and before the results, his doctor turns to me to say, "there is 95 percent sarcoid and 5 percent something else." Two days went by before he called with the results: NO CANCER. So his doctor says it can happen. He now thinks he had bruising caused from the denseness of his sarcoid. My husband has never had high blood pressure. But with all the pain he has, it stays elevated. He still has very severe chest pains that moved down his left arm. All blood work checks out ok as far as his heart goes. His stress test turned out negative as well. Ekg's normal as well as CBC's CMP's PT/PTT PCXR CK CKMB ABG. We have been told that these tests may give false results. The cardiologist first gave him nitro pills he was to put under his tongue. Those only last for a half hour or so. So now he is on a slow release nitro pill that he takes once a day. He still has pain but not as severe. His pressure does stay down, 128/78, where they were staying real high, 149/101. We are wanting his cardiologist to find out if he has sacoid in his heart. To find this out he would have to have a coronary angiogram. We pray he won't find it there. His pains are also in his joints when he wakes up in the morning and lighten up though the day. He has a small place on his upper leg that itches. We have also noticed yellow lesions on his eye. This could also be sarcoid. We are in need of finding a sarcoidosis specialist. This site has been the most informative place we have found, and boy have we been looking. To know that our anxieties we are feeling are being felt by others, is sad, but relieving to know we're not fighting this disease alone. Please feel free to leave answers or questions. And may God Bless you all.
February 16, 2000 - Jenny This past Christmas I got really sick with what I thought was the flu. I am a very active person who runs, bikes, swims, plays tennis, etc. I run in many races to keep in shape. My first visit to the doctor indicated I simply had a bad soar throat. I was put on antibiotics and the sore throat went away. Then, my joints starting aching to the point that I literally had to roll out of bed in the morning, crawl to the dresser, and pull myself up with my arms. During the course of the day, the joint pain would subside, but never go way. I also had these painful red bumps surrounding my knees and ankles. Needless to say, I didn't excercise at all and that in itself was driving me crazy. I went back to the doctor to show that I was having a really difficult time walking. He referred me to a rhuematory specialist who put my on prednozone and took chest x-rays. The prednozone worked great and no side effects! The x-rays showed a node, so they did a cat scan, which further showed a node. So, I have been referred to a lung specialist (there are so many different specialists, a big toe specialist, a little toe specialist). I am awaiting an appointment with this specialist at this point. One thing to note is that when I went off the prednozone, my ankles began to swell again, but without serious pain. So, I am back on the prednozone. Please post any comments you may have regarding similar symptons and doctor's procedures.
February 11, 2000 - Anne I was told last night that my 32 year old son's biopsy came back negative for cancer but they wanted to do another biopsy and grow a culture for 30 days since sarcoid is expected. My son has a three year old daughter, who he loves so much, just built his and his wife's dream house (the whole family helped), and is a police officer. I got to work this morning and got permission from my supervisor to look this up on the internet. Oh my God. I am so scared for him and his family. I had no idea this disease exists. I am a COPD patient, diagnosed with severe asthma. I take prednisone on occasion, use the pulmocort and serevent inhaler twice daily. I never wanted this for my children. My heart goes out to all of the people who suffer from this disease and I will add you to my prayers. Scared to Death.
January 25, 2000 - Anonymous Hi, My lung loss began 1993. By 1996 I could speak only two sentences. My dad got this at the same age as me in his lungs, 48, and it killed him. Dry sauna sweats lowered my blood pressure from 170/120 back down to my regular 120/70. By 1998 I had tried plant polysaccarides; they worked. In 2000 I have blocked lymphs in the chest and my knees are swollen and it is hard to walk. Cannot find a doc gutsy enough to even test for this. Mayo tests in 1995 listed me at risk for Sarcoidosis. This is the first site I ever found that is helpful. Should I get an ACE test and lymph node biopsy? In summer this gets really nasty. 20-40% lung function loss in summer. No one ever smoked in our families. Scottish Celtic gene flaws, I guess.
January 20, 2000 - Alexandre
Dear patients with sarcoidosis,
I’m a pulmonologist from Russia and I’m treating sarcoidosis. I want to improve the care of patients with sarcoidosis in my country. I address this letter to patients with sarcoidosis from all over the world to answer my questions, which can help me to understand and treat my patients better. I’ll compare your answers with the answers of my patients and will try to change the situation in my region. With best regards, Professor Vizel Alexandre.
Please, write your answers opposite the questions and reply it to the address: lordara@mi.ru
January 15, 2000 - Olivia I sympathize with everyone who has sarcoid. It is a very scary and unknown disease. I was diagnosed with sarcoid three years ago. I was diagnosed with chronic sinus infections had sinus surgery but to no avail; the problem continued. My doctor at the time was frustrated and could not find out what was wrong with me; this was at an HMO. I finally got a ppo (private doctor) an older man who after one visit had me have a blood test to determine if it was the disease sarcoidosis. Yes it was. Then I had a biopsy and this confirmed it. I treated with him for a while but not with steriods, just antibotics for the infections. Soon he flaked out on me and I had to get another doctor. Now I have a great ENT doctor who has really been there for me. I had another surgery a caldwel luc which he made two new openings in my maximillary sinuses to help drainage and keep infection to the bare minimal this was done back in April of 1999. This did help and I was healthy until around the holidays when the sarcoid flared up again I went on steriods 40mg for a week and an antibotic, which my body resisted, so the steriods were increased to 60mg and then a medrol pack to bring me down. I was getting better but then I started to wheeze but thankly it was just an upper respiratory infection which I was given more antibotics to take and now it is still slowly going away. Recently I just had a CT Scan of the chest and it revealed several nodules. But my blood work was great and my breathing tests are fine too. It is just really dawning on me how sick I am though and I am starting to get more scared because now my lungs are involved. I am active though, but have been down for a while due to being sick but I am going to get back in to my work out and see what happens.
January 11, 2000 - Majsteel I am trying to get more information on sarcoidosis for a very dear friend of mine, medications diet, other web sites, anything that would help. Thanks.