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December 20, 1999 - Clarence Hines
I have a very ill father who is slowly passing away, from a rare disease called Sarcoidosis. I have been searching for anything that could help his condition; my father is only 54. Your article about EMF treatment gave him and me a spark of hope. Most other doctors, recommend a lung transplant but I know he won't last long enough. I was wondering if you had any contact information (names, addresses and numbers) on who uses this type of therapy in the US or in the world. I would like to speak with someone who could help our situation, and possibly save the life of a man who cannot be described in words alone.
Editor's Reply: I'm sorry but this treatment is only done in Russia. As far as we know it has never been done in the USA. If anyone reading this knows of a doctor using this treatment in the United States, please let us know.
December 15, 1999 - S. B. Payne I have recently talked to a patient of mine at work who has this disease; is it a disease? I have been having lung problems for over 5 years now. The doctors diagnosed me with plearesy, but I have continued to feel chest pains this whole time and weakness on my left side of my chest. I have been using an inhalor and have itching bumps that I have scratched so much, they are now cuts all over my legs, and now I am finding them all over. Is this Sarcoidosis? How do I ask the Dermatologist this without him thinking I am a Hypochondriac? I have gone several times, they give me a cream that doesn't do anything. I am extremely frustrated and scared.
December 13, 1999 - S. Joy Clearly A. K. King (comment from June 7, 1997) does not have a clue when it comes to disease process or physiology. Perhaps he/she should go away and thoroughly educate himself/herself before making such crass comments, causing offence, where probably none is intended.
December 10, 1999 - Tracey Oseland (traceyoseland@hotmail.com) Hi, this is Tracey, My father unfortunately died of Sarcoidosis recently. I would like as much information as possible about the disease, please could someone help me end my greiving process, I need to know. Please reply back thank you.
December 09, 1999 - Mary To Pam, Mia, Karen, Tracy, and Alka: Hi. I found this EMF-Link Hot Topics quite by accident. I was first diagnosed with Pulmonary Sarcoidosis in 1996. I had a recurrent cough (like a seal's bark), chest pain, low-grade fever, some labored breathing, horseness, and low energy for two years while I was under a doctor's care. The doctor had no knowledge whatsoever about Sarcoidosis and claimed that symtoms were due to stress and my menstrual cycle. I was certain that next he was going to say that it was all in my head. I finally left after switching from numberous inhalors, all to no avail. I spent a lot of time exhausted and worried because my symptoms were not improving. I found a wonderful ENT who had the interest and knowledge to order a CT scan. Prior to that time, I spent a lot of time crying from worry and chest pain that would not subsist, with a cough that was extremely embarrasing. My sarcoid nodules were diagnosed via biopsy and broncoscopy. I am thankful eveyday that I found my ENT. I do understand the frustration some of you speak of with the joint pain in legs and the shortness of breath. Walking with any amount of speed or pushing off on my big toes is pain I've never experienced until now. There are days when it seems I've taken a step forward only to take three steps backward. The Sarcoidosis has affected my blood pressure and my cholestrol reading. Both are high. I am ever mindful that there can be a flare up of Sarcoidosis at any time. I wonder if this is the outcome of Sarcoidosis? I can't climb a hill or jog. A 12 minute, one mile walk is like running a marathon. These symptoms come and go, and the Prednisone, which I took for 2 years, prescribed by a Pulmonary Specialist, created havoc on a body with arthritis in the back. I should never have been put on the medicine because of the likeihood of osteoporosis. With women especially, doctors or careful doctors, are very mindful of studies that show a relation between the early onset of osteoporosis and Prednisone use. I've been off Prednisone for 2 years now, but still have the shortness of breath, the joint pain, and was recently diagosed with Morton's neroma in both of my feet. For two winters now I've had bouts with pulmonary pnemonia in the Sarcoid lung. The nodules have not grown and the disease has stabilized in one lung only. My lung is doing much better than my body. I am ever hopeful that this disease will disappear, but what I read and what I've learned from doctors is contradictory, so I really don't know what the future will hold. I was quite active before the Sarcoidosis intrusion. Hiking, pace walking, aerobics, dancing, and some jogging were part of my daily routine. Now I am overweight and can't seem to build up enough stamina to become energized before becoming exhausted. I assume many of you do some of the following routinely-once a year-or sooner if you become ill: Thyroid Screening (TST) to rule out under or over active Thyroid symptoms; once a year get an eye exam to rule out inflammation of the retina and/or other eye areas; get Pulmonary Function Tests (PFT) done once a year as well --a complete test-- usually includes blood work to check the oxygenation of the blood, a CT scan of the chest/lung or an MRI, and maybe a visit to a Dermatologist to rule out Sarcoidosis of the skin or Rosacea; blood work by a Rheumatologist to rule out other joint or vascular diseases. Finally, find a committed M.D. who knows about Sarcoidosis and will be understanding, especially when it flares up and/or when Sarcoidosis might produce some other ailment. There are many doctors in practice who do wonderful work and know how to be sympathetic and kind, and have astute listening skills. Don't be intimidated by the less committed docs. If you are dissatisfied with your care, please, find another doctor. You must put yourself first. Put energy into researching your disease and finding ways to cope with it, and talk with your doctor about anything that concerns you about Sarcoidosis. The greatest compliment to a doctor is that you trust him/her and feel safe in his/her care. Don't expect less. Do try to stay active. Walk, no matter how slow. It is necessary to do activity for cardiovascular and pulmonary health. Some of you might be fortunate to be a member of a Sarcoidosis Support Group. Stay well.
November 29, 1999 - Victoria Hello, I have a sister-in-law with this awful illness - she has many of the symptoms that are described by lots of you and more. I am sending her this web site as I don't think she has much hope left. She is 53 and just got her PhD in Education. Now her career is over as she is so weak most of the time. Thanks all of you -- God bless you. Victoria
November 27, 1999 - Jay Lloyd Dear Website Designer, Your site at http://www.xyz.com has been nominated to receive the Sarcoidosis Golden Lifesaver Award! This award recognizes internet websites that promote sarcoidosis awareness involving patient support and medical information in a well organized, well maintained site. It is intended to include any sarcoid related website that would like to be involved in providing patients, family members and loved ones of sarcoidosis patients a place to be exposed to the many different and diverse sarcoidosis websites on the Internet. The Sarcoidosis Golden Lifesaver Award is given out by nomination only. This award is being sponsored by the Sarcoidosis Online Sites website developers in an effort to recognize all the other websites on the Internet dedicated to sarcoidosis awareness. Over the past three years Sarcoidosis Online Sites has become known and trusted by the sarcoidosis community for providing reliable information about sarcoidosis, free of charge, to patients, their friends and families. By including this award on your website, you join the many other professional healthcare organizations that have excelled in providing a quality sarcoidosis awareness site. Recognition of your excellence will also be placed on the Sarcoidosis Online Sites Library of Honored Websites page, so that those seeking award winning information can find your site easily. Congratulations! And on behalf of the many physicians and clinicians who dedicate their time to sarcoidosis research, and the many patients who visit your site, you have our sincere gratitude.
November 27, 1999 - Tracy Hi, I was just released from a 5 week stay in the hospital where I was diagnosed with sarcoidosis. Mine is of the lymph nodes and lungs. I'm so confused. I have this horrible pain in the sternum and breast bone, which is where they said the lymph nodes are most affected. I have become very dependent on a heating pad, which helps. I seems that the only time that I am not in some type of pain is when I am laying flat on my back. I was put on 2 medications; morphine and prednisone. Does anyone else suffer from this type pain, and if so PLEASE help me. I'm so scared, and need some answers.
November 24, 1999 - Trena Hi, I'm Trena. Only two weeks ago I was diagnoised with sarcoidosis. I knew that there was something going on wrong with me. It was very hard for me to care for my family at the end of the day because I was always very tired. My mood swings got bad and a lot of the things that I was interested in became unbearable. The next worst thing was when my blood work showed signs of inflamation. My back, arms, and entire body began to ache me in all the joints. The specialists told me that it may have been lupus. The last straw was when I couldn't breathe and was weazing. My oncologist told me that it had to be either sarcoidoisis or cancer of the lymphnoids. I'm really thanking God that it's not cancer. The rest of my symptoms are minor compared to that giant.
November 23, 1999 - Darlene HI! I'm Darlene and I have sarcoidosis of the nose and sinuses. I was diagnosed in 1991 after having my tonsils removed at age 33. I received no treatment until 1993 when I was diagnosed by an ENT specialist at Duke University. I maintain a positive outlook, despite chronic headaches and sinus infections. I have had a total of three surgeries since 1993. I work everyday as a rehabilitaion registered nurse. My best advice is to follow your doctor's instructions to the letter, keep up to date with required testing and always take your medications as ordered.
November 15, 1999 - Pam I am trying to find out how prednisone affects the body and in particular the joints in the hips and lower back. I have had lower back problems for years but it is worse since taking prednisone for 7 months-then finding out that I am steroid resistant. My hips are so painful that I get stuck in the tub or in bed and have to have help to get up. I have resorted to showers for now, but still would like to know the affects of this drug. All I can get from my lung doctor is that the pain is most likely traced back to the prednisone and that I will need a hip replacement but that I am ineligible because of Sarcoidosis of the Lungs. Please reply back. Thank you
November 14, 1999 - Mia Hello, I was diagnosed with Sarcoidosis in 1984, and just as my doctor was going to treat me with a steroid, it mysteriously went away. But now recently, I have shortness of breath, especially when going upstairs or up inclines. And recent chest x-rays do not show any signs of the Sarcoidosis. I need to know what are Sarcoidal nodules? Could someone tell me what these are and what they look like? Also what are other symptoms of Sarcoidosis? Thank you
November 12, 1999 - Christie Hi, My name is Christie, I was diagnosed with sarcoidosis in 1995. The year before was a terrible year. My family doctor treated me for something else. Like others, I had to go through a lot of things for this illness to be named. I am listed in the record book at the University Medical Center located in Jackson,Mississippi. I have a fear that eventually this will be what I will die of because reseachers do not know enough about it. One thing that I would like to do is to encourage others to do if they think that they might have this illness. First of all you know your own body so if you know something is wrong then don't let anyone tell you anything different. Don't be discouraged if your family doctor cannot diagnose you, ask to be referred. Stay positive and just remember to keep a healthy mind. One more thing whatever medicine you take, ask your pharamacist to give you a print out of all the side-effects.
November 09, 1999 - Atiba Hello everyone, I have had tremendously effective results healing myself from Sarcoidosis by combining Tai-Chi, Qi-Gong, Yoga, and a Vegetarian diet. The vegetarian diet reduces a great deal of the mucus from your body. Check out holistic practitioners in your area. If you build up your immune system your body can begin to fight off the disease. Keep taking your medicine until you feel comfortable leving it alone.
November 03, 1999 - Casaundra Hi, my husband has had sarcodosis for four months. He was doing great at first on the predisone; now the doctor changed his dosage. So he has been having the symptons over again, weight loss, headaches, loss of appetite, and always tired. I took things in my own hands and he is now going to a brain specialist this week. Maybe this doctor can give us help and more answers.
October 30, 1999 - Lisa My ex-husband died, probably of sarcodosis, last Christmas. It affected his heart. I tried to find out as much information as I could, which was minimal. He left 3 sons. Should they be tested? The doctor didn't have an answer. My ex's sister also has sarcodosis, but they don't know how it is passed. It is too late for my ex, but I want to be able to help my children. Does any body know? They also thought it might be Gilliam Barres syndrom. I gave him vitamins to boost his imune system, but he didn't take much, and his girlfriend could not force him. Thank you if anyone can help.
October 25, 1999 - Karen I am 21 years old and have suffered since I was 12, but have only been diagnosed for 4 years. The doctors told me that there was nothing wrong with me and sent me home on many occasions. Even when suffering from erthyma nodosa and not being able to walk, they told me to stop being silly, as there was nothing physically wrong with me and it was all in my head. I suffered for many years at the hands of these so called Doctors and can`t do a thing about it. Then I met a doctor who listened to me as a person instead of a child and told me what was wrong with me. I was on steriods for nearly 4 years and have only been off them for a couple of months. Like most other people, the steriods affected me bad and I even became confused unable to seperate the side effects and the cause. My doctor, my guardian angel, is full of hope and knows I will find health one day, but is honest and tells me it could be a long journey before I am rid of it forever. Sometimes I feel very bitter but know it could be worse and now I know I`m not the only one.
October 21, 1999 - Judy I am desperately looking for information regarding sarcoidosis and unexplained weight loss. My mother has been suffering from sarcoidosis for about 15 years. She has it quite badly in her lungs but is in remission at the moment. It has also appeared in her finger. In the last 2 years she has dropped at least half of her body weight. She is now down to skin and bones and is still losing weight. She has had all sorts of tests and everything has been ruled out. I managed to find some reference to weight loss and sarcoidosis last year on the American Lung Association web site, but her doctors are not acknowledging this as a symptom. Is there any more information that you could provide for me regarding this subject? Is there anything that can be done if this is caused by the sarcoidosis? We are all extremely worried about my Mom, as is she. There is not much left to her. I would appreciate any help that you can give me. Thank you very much.
October 21, 1999 - Carrie My name is Carrie and I am 34 years old. I was diagnosed with sarcoidosis when I was 28 years old. I have had three biopsies starting at the age of 23 and after the second one they fianlly diagnosed me correctly. Just today I found another lump in my groin which prompted me to find this website. I decided a long time ago not to go on the steroids and this time I don't think that I can go through with another operation. I'm going to look into accupuncture and other holistic alternatives. Besides having reoccurring issues with my lyphatic system, I have issues with my lungs. I seem to have a three year reoccurance of the disease and always starting in October. Has anyone else noticed a pattern?