[ EMF-Link Home
| Online Store
| Comments
| Up One Level ]
February 24, 1998 - Sherri I mainly have a question: My sarcoidosis is seemingly chronic, as I have been plagued now for at least 6 years with continual problems and symptoms without a break; although it does seem to move from organ to organ. Because I have hepatitis C, as well as Sarcoidosis, I can not do the therapies for either one as one therapy can exacerbate the other disease. So if anyone knows of a therapy to do for Sarcoidosis, that will NOT decrease my immune system, it would help me to know. Also - I have been diagnosed now, by a liver biopsy, with it in my liver along with the hepatitis C. I just had a tongue biopsy - as my tongue has had a lesion growing on it, that my dentist suspects sarcoid. I've never heard of that; has anyone else?
February 24, 1998 - Ruth I am a 67 year old white female who recently had eye surgery to remove floaters and other debris in my left eye. After the operation, complications arose and I was put on prednisone. I am attended by the best opth/uveitis specialists in the world. At first they had no idea what I had, some calling it an inflammation and edema problem, but just today they called it sarcoidosis. The prednisone is really doing a number on me with severe side effects such as dizziness and instability. Does anyone else have the symptom? I also have the fat face, weak legs, depression, and weight gain-hunger syndrome. I hate the side effects but I do recognize the value of the drug to combat the inflamation.
February 24, 1998 - Neets I have had sarcoidosis for 22 years, mostly lung and spleen involvement. I am very active in sports, etc. so I'm always looking for new ways to breath easier. Recently, I have been taking Echinacea on a daily basis, and have avoided any respiratory ailments, colds, etc. since being on Echinacea. Then I read recently that Echinacea may be harmful to anyone with autoimmune disease. Do you have any information on this theory? In general, I keep one step ahead of my disease by taking vitamins, herbs, staying active, and mentally positive. Am I fooling myself? Thanks for your input.
February 22, 1998 - Terry My sister-in-law died at age 36 three years ago on Valentine's Day of this disease. It took 6 weeks to get the results of her death. When the results came back, we had never heard of it and were given very little information. We have been trying to find out if it is hereditary because there are several nieces and nephews.
February 16, 1998 - Brian My name is Brian Dresser and I was diagnosed with sarcoidosis in November 97. I had pain in my lower legs, lumps, swollen joints, and found it very difficult to get moving in the morning. After reading the comments about other patients' difficulties I felt I was luckier than most, and I can empathize with the people in our group. In Feburary 98 I had another chest X-ray and found that the growth had almost disappeared, however this may not be the case as the doctor would have us believe. I will be checking this site more often for updates.
February 10, 1998 - Darin My sister-in-law was recently diagnosed with Sarcoidosis and I'm attempting to find out if there are support groups or anyone who is willing to correspond with her via E-mail who has experience with this disease. If you know of any support groups or are willing to correspond, please email me at your convenience. Thanks in advance.
February 10, 1998 - Bonnie My name is Bonnie, I have suffered with sarcoidosis for 30+ years. I have maintained my health until this year. I am now having trouble with the right side of my face and severe headaches and pain behind my eye. I am waiting for a consultation with a specialist in neuro-sarcoidosis. I am afraid of what I am facing now due to the fact that the pain is so intense and my short term memory is diminishing so fast. If anyone has any information on this stage of the disease and any suggestions on pain management please contact me as soon as possible. I am not on any form of treatment except tegretol for control of seizures. I have tried predisone and it really did not help me; it made me feel like I was going crazy and I'm not going to try it again. When I first started having the symptoms of face pain I was on 80 mg of predisone for about 4 months, and then tapered down over the course of a year. If anyone would like to share any information with me concerning what I have described, please feel free to contact me at my internet address. Thanks and have a blessed day.
January 24, 1998 - Tammy My name is Tammy Sue Davis. I am 31 years old and live in North Carolina. I was diagnosed by biopsy in November of 1995. I have been through the HIGH doses of prednisone as high as 120 mg. I finally ended up in Duke University Hospital in March of 1997 with granuloma nodosum in my face, one so bad that it pushed my left eye out of its orbit, and left me with permanent cranial nerve damage. After seeing some very knowledgeable doctors at this facility I learned that my doctor (who had never seen sarcoid until my case) had been very negligent with my treatment having never sent me to any specialist. I have 30% fibrotic damage to the left lung and 25% to the right. I am tired ALL the time and catch every little cold, flu, etc. that comes along. Two weeks ago I acquired shingles all over the left side of my face. My doctors are using a combination of prednisone and a weekly shot of methotrexate (a form of chemotherapy). This was the long way to get to the question I had to ask. Is there anything new out there for me to try? I now have severe panic attacks and depression that I am being treated for chemically, that I never had before this. I am losing my faith in the Medical community and feel I will ever feel "normal" again. If there is anything you can tell me I would appreciate it if you have the time. Thank You.
January 23, 1998 - Tracy My mother who was 63 died from Sarcoidosis Jan. 5, 1998. She was in so much agony. Her face and feet were full of fluid and she was on oxygen 24 hours a day due to the Sarcoidosis being in her lungs. My mother discovered that she had this disease in 1982 and she had been taking predizone since then. The side effects are terrible. I can remember my mother coughing all night and having shortness of breath. She did good in the 1980s but the disease advanced in 1996 and 1997. I do believe it spread to her brain because she became confused and could not speak as well. At the end, she developed sores in her mouth and she died a few days later. I’m happy that she is not suffering anymore.
January 22, 1998 - Patti I am a 36 year old woman who has had Sarcoid since 1989. It presented itself with flu-like symptoms that would never go away. I was diagnosed with possible Lymphoma, Hodgkins, even HIV before a Laporotomy of my abdomen showed definitive Sarcoid. I have had biopsies of my liver lungs and lymph system. I also had my spleen removed since it had shut down completely due to the Sarcoid. I have minimal lung involvement with normal pulmonary function tests. I also have central nervous system Sarcoid with severe headaches and balance problems. I was initially treated with Prednisone 40 mg a day along with Methotrexate. This did not seem to help so we cut out the Methotrexate and tried Immuran. I have been on the Immuran for several years and I still suffer from severe fatigue, chronic pain in my joints, as well as unbearable headaches. I was also told that this disease would probably go into remission in 5 to 7 years. I am still waiting. My ACE level blood test is more often normal than not, this test supposedly shows when the disease is active. At the time of my biopsy the test was normal. I do show elevated calcium levels as well as an unusually high white blood cell count. I have been off the steroids for about a year and still experience the same symtoms. My physician is supposed to be one of the top researchers in the country on this disease and he has no answers for my questions. This is a baffeling disease for which the answers are never consistent. Information such as this may help someone else with the day to day struggle with this disease. Maybe it just helps to know that you are not alone. Please keep the information coming.
January 19, 1998 - Judy I have been diagnosed with sarcoidosis two years ago. Yes I have a very difficult time dealing with this disease. I constantly search for more information to help explain what is going on with my body, and my whole being in every aspect it has affected me, leaving me lost and lonely, no one to relate to. Please send me any information you may have, support groups, doctors specializing in sarcoid research, etc. My name is Judy Jansen, PO Box 945, Bayview, ID 83803. Thank you so very much. Warmly, Judy
January 15, 1998 - Gregory My 36 year-old sister was recently diagnosed with sarcoidoisis. She was hospitalized and had a pacemaker inserted before her diagnosis. Is this one of the necessary medical treatments for this disease? I myself have a chronic pain disorder known as reflex sympathetic dystrophy.
January 6, 1998 - Sylvia I originally posted to this board on Oct. 22, 1997. Since then, I can report that the pinkish/purplish bruises above my eye, on my neck and shoulder and the hoarseness in my voice are gone. As I stated before, I suspect that the change of seasons has a lot to do with this. I live in the Southeastern part of the country, which according to the medical literature I have read, is a hotbed for sarcoidosis. It's also a good place for all kinds of allergies. When I was first diagnosed with sarcoid in 1992, the doctor told me that sarcoid normally runs its course in less than five years in most people. I even verified this by reading several journals at the medical library. I am beginning to think that mine may have run its course. I am continually surprised by the number of people who say they have suffered with this ailment for 10, 20 and more years. I wonder what makes it so for some and not for others. Do I need to anticipate more episodes with this disease? Plus, it seems that many who have been suffering longer and harder are also on steroid therapy, which I never began. I can't help but wonder why this disease manifests itself so differently in so many people. I suppose it has to do with where the disease settles in a person's body, but is anyone aware of other explanations?
January 5, 1998 - Carol I just discovered this site and am glad I did. Sarcoidoisis is such an unknown that I'm not sure what symptoms belong with the disease and what are signs of aging, or other illness, or psychosomatic. My chest x-rays are fine. They discovered elevated liver enzymes and slight inflammation and granulomas in a liver biopsy. I am having the pulmonary function tests done in a few days. I tire easily and it seems that others with this disease have the same shortness of breath, joint pain and fatigue as I do. Because I am overweight, some doctors want to blame that for the symptoms, but I know the difference. At least I know I haven't lost my mind. It is a difficult disease to describe to family members since I do not LOOK ill. My thanks to each of you for the support your comments have offered.
January 5, 1998 - Sean I have a male relative aged 44, who was diagnosed 4 years ago with having sarcoidosis of the brain. The hospital were surprised at this as it is normally only located in the lungs. A shunt was inserted at the time to relieve pressure and drain fluid. He is presently unwell with severe headaches and it has been discovered that there is an unusually high calcium amount in blood and kidneys. His doctor thinks this may be caused by sarcoidosis, has anyone heard of this before, and in particular can further information be supplied regarding the apparent sarcoidosis in the brain?
January 5, 1998 - Nikkalia My grandmother recently passed away from the long sufferings of Sarcoidosis. I do not think that there will be a cure for this disease. My grandmother suffered with this disease for almost thirty years. She was on prednosone, which did not help her towards the end of her battle. She began hallucinating objects and words, it was almost as if she was experencing dementia. All of her organs were effected at the end of her illness. She only was diagnosed with this disease in her lungs. Every organ literally was shutting down. It was difficult to see her suffer; no other medicine beside the steroid could be administered to her. She was in so much pain that she shook constantly. I would love to know if this disease is genetic, why is there limited information on this disease, and what are the early signs of this disease?