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September 08, 2000 - Brenay Hello, it is so wonderful to see that I am not alone with this disease. I was diagnosed with Sarcoidosis in June 2000. In October of 1999 I woke up with red dots all over my legs and my ankles were so swollen that I could hardly walk. I also felt tired, my body ached constantly, my eyes were blurry and I kept a sinus infection. I have a wonderful doctor. She ran all sorts of tests. Finally, she sent me to an allergist. I was blessed here too. She noticed my weight loss (36 pounds) and my cough and had did a breathing test. I was breathing at 50%. She then mentioned Sarcoidosis, but said I needed an X-ray to confirm. She then sent me to a lung specialist who did a lung biopsy and Sarcoidosis was confirmed. I have scarring in my lower lungs. I was put on 20mg of prednisione and immediately felt better. I go to the eye doctor on the 18th to see if it is in my eyes. My lung specialist says he is going to start the prednisione at 10mg in October to every other day. I am going to go to the Medical University of South Carolina to see Dr. Marc Judson to get a second opinion. My doctor does not mind and it will ease my mind, since all that I haveI have been taking prednisione for two months with out any weight gain. I find drinking at least 90 ounces of water daily keeps my food binges down. I know by reading all the other articles that I am truly blessed. Although I am tired, God has answered my prayers about the weight gain and mood swings. Hang in there all of you. It is going to work out. Please feel free to respond. God Bless each and every one of you. Remember God Can!
September 03, 2000 - Lisa I am a 33 year old white female who was diagnosed with sarcoid of the outer lung in September, 97. After severe pain in my rib that went into the back in late May 97 I was thought to have sarcoid and also fibromyalgia. Sarcoid was confirmed that September. I have suffered chronic pain since even though the sarcoid in lungs is thought to be in remission. I've never taken steroids. I am currently treated for fibromyalgia and chronic fatigue. I work a full time job. I wonder how many people with sarcoid have similar muscle tender point and trigger point pain as I do. What are the signs of muscular skeletal sarcoid? After a sarcoid symposium in January 2000 I wonder if my Fibro is really sarcoid undiagnosed. Please offer your symptoms of muscle and skeletal sarcoid. It is such a bittersweet experience to see so many people with sarcoidosis online. It is comforting to find support and people in similar situations, however my heart aches for the many sufferers.
August 29, 2000 - Deanna I have a relative who has recently been diagnosed with this horrible disease. He does not want to use conventional medicine. What kind of help have any of you gotten from alternative therapies? I'm just learning how awesome herbs and magnetic/far infrared therapy is. Has anyone used anything like this? I saw that some people had used melatonin with good results but I couldn't get any details. From what I understand about alternative therapies, they don't heal us but they create an environment so our bodies can repair themselves. I know our bodies repair while we are in deep sleep so this is how melatonin could be a good option. Also magnetic sleep pads help us to go into a deeper sleep so I feel this would be a good option. What about any kind of liver supplement? It seems to me that with this disease keeping your liver functioning at its best would help to clear up some of the symptoms. I would love to have input from anyone who has tried any form of natural healing. Thanks and hang in there. The answers to many of the diseases of today are just waiting to be found.
August 19, 2000 - Bryant Hello! My name is Bryant and I have sarcoid. I wanted to know if anyone out there has a ulcer problem caused by the sarcoid?
August 16, 2000 - Eloise I caught mine from working at General Motors zbarting vans. I have had it since 1988 and each year it causes other problems like every year I get pneumonia and now in 2000 my thyroids are acting up. I am on oxygen all the time and taking so many different kinds of pills, some days I feel like a zombie, just moving around not really knowing what I am doing sometimes. I stopped taking the predisone because they were just making me gain weight, and carrying around a portable oxygen tank and being 5'1" is very tiring. The pain gets worse, I get some kind of shots in my back or behind to ease some pain. There is a lot more that I could tell about this, but now I am tired.
August 15, 2000 - Rhonda My name is Rhonda. I am a 44 year old Black, American woman. About 11 years ago I came down with what I thought was a head cold and was later diagnosed with sinusitus and rhinitus. A few years later lesions were showing up on my arms which a doctor diagnosed as cavernous hemangioma. Because the lesions started spreading to my face, I went to the doctor. Just one month ago I was diagnosed sarcoidosis. My dermatologist decided to treat the condition with methotrexate instead of prednisone. So far I am not having any physical or known side affects. A word of encourgement for other suffers though - God is the cure of all unrighteousness and sarcoidosis is unrighteous. Let's pray together and patiently wait upon a response from the Almighty Creator. He knows the source and cure.
August 15, 2000 - Sherri I'm desperately seeking information regarding Sarcoidosis of the Larynx. No one is positive I have it, but we've ruled out every other possible disease. I've had a swollen epiglottis for over a year now, with no relief. Any information posted here is greatly appreciated.
August 12, 2000 - Shawn I have read some of the articles and know and understand how you all feel. I have had it for quite some time now and its kicking my ass real bad. It's tearing my lungs apart, down to around 60% to 55% lung capacity. I am wearing lenses now so I can see, have the rashes, bumps, and blistering patches on my skin, and my feet are swollen and it really hurts when I walk. But I'll be damned if its going to win. I refuse to and know everyone out there will too, we just gots to.
August 12, 2000 - Angela I have been struggling with sarcoidosis for 11 years. I am 28 years old now. I was on extremely high doses of prednisone for about 6 years straight before I realized that it should only be 3 months at a time with a 3 month break. I blew up to 200lbs. So I decided to go off prednisone. I've been off for 5 years unless my asthma acts up. I feel that prednisone is the quick solution to a complicated problem. I live in Charlottetown P.E.I. I would love to get a ribbon. Sarcoidosis is not a known disease were I live but there is a big percentage here. There are now support groups. I think it is great that I can get on the computer and see that I'm not alone.
August 5, 2000 - Renea I have told I have sarcoid for over three years. The body aches are so bad and I feel like giving up every other day. It is all in my lungs. Is there anyone to talk to.
August 5, 2000 - Vicki I was diagnosed with sarcoidosis in March of 1994. I had terrible joint pain and night sweats, along with my lungs hurting terribly, and a constant choking cough, weight loss, and my eyes started to hurt. I had these strange nodules growing on my knees so my doctor had them biopsied. That's how it was confirmed it was sarcoid. My doctor originally thought I had Lupus. I never had complete testing for Lupus; she thought I might actually have a mild border line case of that too. I was put on prednisone and fish oil capsules, along with a medication called plaqeunil. It is mainly used for Malaria, but seems to help with lupus and sarcoid. I stayed sick for about a year and a half. I sometimes feel that I still have it, that it is just waiting to come back full blown again. I take lots of herbs and vitamins, and get deep tissue massages, along with lots of walking and trying to keep allergies and asthma under control. Omega 3 oils are very good for inflammation of the joints and inflammation in general.
August 3, 2000 - Sharell Please can anyone tell me about stage 3 sarcoidosis. I was told it was very serious; please e-mail me if anyone has information for me. It would be greatly appreciated. Thank You. sharellc@aol.com
July 28, 2000 - Sue I am going in for tests this morning for possible sarcoid - please tell what it is and the causes and the symptoms and treatments involved. I need to know.
July 17, 2000 - Lillie My comment is that I am glad to have found sarcoidosis on the internet. I would like to know if there are any specialists near Houston. I am 56 years old, I was diagnosed in 1971. However, I am certain that I had this condition from childhood. When I was 10-11 years old it started in the parotid gland. That was treated, it ruptured. Seemed to get better, but never went away. I never felt good, was never very active. After I married and had children I began to get weaker, never felt good had fever, gasped for breath, went to doctors, was told I was depressed & anemic. When I finally pointed out the large knots in the neck - clavicle area someone finally listened. From there I was on steroids for three years. They, did a biopsy on the nodes in my neck. Chest x-rays & tomograms showed a growth the size of a large grapefruit. It was very stubborn. So am I. I went back to work even though the doctor said I could not. I said I could. The prednisone made me really fat, and it happened so fast that my skin could not take it. I had two sons who weighed over 10 lbs each at birth. I wonder if sarcoid had anything to do with that. They kept asking me after they were born if I was diabetic and implied that diabetics sometimes have large babies. But with these large babies I never had stretchmarks. After prednisilone I have them on upper arms, abdomen, breasts, thighs and back of my calves near or behind the knee. They are dark red/purple and are deep and wide and ugly. Big enough to lay two fingers in. After I was on treatment for the sarcoid, starting in July 1971, I got pneumonia in February 1972 and was in the hospital for almost 3 months. My lung where the sarcoid was collapsed. I am still fat, still scarred, and still alive. I thought I had beaten this thing. I am a professional healthcare consultant. Even so, I have not met another physician since Dr. D. W. Gaulke, in Houston, who has acknowledged this disease as a problem. He has been deceased a long time. He was a great doctor. Now, I need hormones at my age. Can't take them because they seem to cause the sarcoid to flare up. I got uveitis in my eyes really bad. Could not see at all five years ago. At the same time it seemed to be attacking my bones and my back. Sneaky little disease that waxes and wanes and lets you believe it is gone while attacking somwhere else. I now am in need of someone to pay attention. My opthalmologist asked me if I was diabetic or had lupus when the uveitis hit me 5 years ago, first in one eye and then the other. I told him I had Sarcoidosis. He just shrugged. I found on the internet that uveitis is a complication of sarcoidosis, along with arrythmias. But most of all the extreme, painful, total body muscle spasms are killing me. And every doctor is puzzled. Give me muscle relaxers and K-dur, but it doesn't help. But now, I have found that Sarcoidosis and Spasticity are definitely connected. I' going to print it and find a real doctor again. Thanks for letting me say all this. P.S. - I forgot to mention the lesions on my tongue. It took 20 years for someone to put a name to that. They called it Stomatitis, and I am quite sure it is related to the sarcoid.
July 16, 2000 - Max Hi! I am 32 y/o white male, from Israel, 'sarcoidosis-positive' for half a year. I started with 30mg of prednisone, today I am on 10mg, alternating days. All my lung tests improvement happened in the first couple of weeks of prednisone, since then I am just keeping what has remained from my lungs. My worst nightmare, however, is a recurring sinusitis which I never had before and now is back every month or two. My doctors say they do not see any connection between the diseases. Did somebody experience a similar thing?
July 12, 2000 - Robert On May 25, 2000 I was diagnosed with sarcoid of the Lungs and Liver. It started on Easter weekend six weeks prior. Out of the blue I had tremendous pain in my chest and back and had a 103 fever. At first it was thought to be pneumonia. I was given antibotics and the fever went away. Lucky for me, my doctor advised me to get x-rays before and after. My x-rays showed cloudiness in the lungs both times. After 5 chest x-rays, 9 blood draws, cat scan and a lung scope, it was confirmed. I spent 4 days in the hospital in early June with 104 fevers and chills that would last for an hour. After the four days all they could say was it was the sarcoid in my body. I am on 40 mg predisone every day. The first two weeks were hell and I thought my wife was going to divorce me. The side effects are a little easier now. The worst thing is now I have to take ambien, a sleep aid. I am in a little pain, but manage to work and keep in a fairly normal routine. The Predisone is slowly making me gain weight. I can't work out as hard becuse of the Sarcoid, but I take to limit anyway. My treatment is just begining. From what I have read it could be worse.
July 10, 2000 - Suzanne I was diagnosed several weeks ago with sarcoidosis as evidenced by x-rays, bone scans and bloodwork, as well as symptoms of - frequent infections (usually in airways, ears/nose/throat), chronically low immune system, small cysts (feet, ankles & wrists), bone spurs (feet, wrists, spine), chest congestion, headaches, lesions under tongue and in throat, painful joints in hips, feet, ankles, spine and wrists. If that isn't enough to overload a person.... I am looking for info regarding immunity boosters, clinical trials, whatever helps. I feel if I could learn to boost my immune system, I wouldn't feel so bad all the time with constant infections. At least, that's one little avenue I could pursue. I am currently on prednizone (5mg/day) and ibuprofen/tylenol as needed. Statesville, NC
July 01, 2000 - Sydney I have been diagnosed with sarcoidosis and have had all the tests etc. I also had 2 operations and was treated for TB before being diagnosed with sarcoidosis. From how I feel, what I have read, and info on the net it looks like sarcoid is here to stay once you get it. I've been on prednisone for 10 months had salivary gland removed and numerous biopsies. Some days I wonder if I will ever feel normal again. I have all the symptoms and think a show on Oprah about sarcoidosis would be great. I hope we see it in Australia. To sum up how I feel: scared, lost, and confused. Although my doc is great, you have to have this horrid illness to understand. P.S; I have 3 children, try to keep a business running with my husband, and am 42yrs old. I keep being told it's not cancer but ...its hard. And I am scared and tired. Good luck to all others with sarcoid. I never typed on computer until today will keep up with info.