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June 13, 1999 - Ralph I just found this section. I was first diagnosed with Sarcoid about four years ago. Initially, my doctor opted to see how it progressed since I had virtually no symptoms. Some coughing developed, but that had come about a few years before. Nevertheless, I was on prednisone and then tapered to 15 mg every other day. I gradually weaned myself off prednisone because of some side effects. The thing that has interested me in the comments here are the effects of food. I have noticed when I do not have milk for a few days, the morning coughing symptoms subside. Now, I just read that someone has found an effect from corn and wheat products. Have others found this connection? Since being off prednisone my right leg tends to ache (but this is preferable to the prednisone side effects) and sometimes I find a slight out-of-breath problem. Obviously, my symptoms pale in comparison to others. However, I would like to keep it that way. Thus, I would be interested in comments on food and sarcoid and sensitivity. Of passing interest, I seem to have a coughing problem every morning around 10-10:30am. The curious thing is that even when I am in a different time zone, such as 6 hour difference, the symptoms start at 4:00pm there. Even recently in New Mexico, 2 hour difference the symptoms then started earlier around 8:30am. I guess if I were in these areas for a substantial length of time my body clock would adjust. Well, as you can read, my problems are nowhere near what most are; it's just that I would like to keep it that way and the very kind comments and reviews of those who are suffering so much are very much appreciated. Thanks.
June 12, 1999 - Elisa My mother was diagnosed with pulmuary sarcodosis, 7 years ago. What I'm wondering is if sarcodosis can affect your blood? And if it can give you joint pain, primarily your finger joints and chest bone wall?
June 07, 1999 - Marcia Right now my Sarcoid is in remission and I am so grateful. My question to other folks is this: Is there anyone out there who took prednisone, was able to quit taking it but is still suffering from side effects? I still have the puffy back and stomach and also the thin skin that bruises so easily. My doctor tried to tell me that since I am off the prednisone, I shouldn't still have those things. I pulled my blouse down from my neck, and told him to look at it. He said, I guess you do, but you shouldn't. I would love to hear from anyone else in my situation.
June 05, 1999 - Sandra I also was enjoying the news that I am not alone with this disease. I was diagnosed with sarcoid in April, 1999, after my lungs were not clear from what was supposed to have been pneumonia. A biopsy later confirmed the disease. However, after reading about the disease, I remember that last summer when I went to the doctor, because of a leg rash, I was told that the rash was from flea bites. So I feel that I have had this disease for some time. I am on an oral inhaler for the time being. I have been going through a lot of stress and my chest seems to hurt all of the time. Right now, I am trying to find the correct herbal medicine to take in order to ease my discomfort. Can anyone help me with this request. I am a 44 year old Afro-American female.
May 19, 1999 - Jeni My husband has sarcoidosis, but in the brain. We found out one time while he was driving, had to itch his eye and found out he couldn't see out of the other one. I can't find any info on this that has to do with the brain. They (his doctors) do say however that it could expand to other parts of his body. He is currently on Prednisone and Maxide for the weight gain from the prednisone. He takes lots of vitamins. He has had this problem for about 7 years. He is 38 and considering, he is in great shape. He works two jobs, nearly 70 hours a week, and we both have been told that as long as he is on the prednisone he could live a long wonderful life. But go off the prednisone, death could come as soon as 6 months. I pray everyday that he will outlive me. But both of us realize that prednisone has many side effects and isn't supposed to be a long term medication. I was wondering if anyone could provide me with some information about the part of it being in the brain and also the long term effects of prednisone, like what should we look for and so on. thanks
May 03, 1999 - Eleanor I am a 59 year old black female mother of seven. I have been struggling with Sarcoidosis for 12 years. I was in remission for 9 years. My face has recently regained it's color, and I feel healthy with the exception of a little shortness of breath. I recently went the doctor's office and they say I need to take steroids. I am not sure what to expect. Can anyone guide me through the next steps?
April 29, 1999 - Aleta In looking for more information on this disease, I found this page of comments and after reading only half of them, ended up in tears. I am a 40 year old African-American female who was diagnosed with sarcoidosis in '89 after an inner ear infection. I took antibiotics for the infection for several months and it drained into a node at the base of my neck, which subsequently filled with T-Lymphocytes and increased in size. When several more months of antibiotics would not affect the "infected" node, it was excised and biopsied. The non-caseating granuloma prompted a CT scan of the chest which revealed further invasion in both lungs. I went on prednisone immediately and for the next few years, that was the only treatment used during a flare up. My eyes and facial nodes were affected. I did not attribute the fatigue, night sweats, weight loss, blurred vision and changes in judgement to sarcoidosis until I began to read case histories and web sites. In '94, I was diagnosed with asthma. For the next four years, I graduated from regular inhalers to the steroids and finally to a home nebulizer. In September, 1998, my pulmonologist, in frustration, ordered another chest x-ray which revealed a severely enlarged heart. I had been going into congestive heart failure for years and was only diagnosed when I reached the point where I could not cross a street without physical assistance. Now I am taking Accupril, Digoxin, Lasix, Coreg and Prednisone - daily. I bounce between a Pulmonologist, a Cardiologist, an x-ray tech and radiologist, a nurse who specializes in heart failure patients, an internist and a naturopath. I am tired, achy, depressed, and lonely, but hopeful. No one that I talk with who does not have it understands feeling the physical pain, exhaustion and mental confusion that this disease brings. I am glad that you do. If I find that specific treatments or regimens bring comfort, I will forward the information to all of you. Peace, Aleta.
April 28, 1999 - Lemuel I ran across this website and was moved from the comments of so many people with this disease. My sister has been struggling with sacoidosis for what seems like many years. She'll be 48 on May 3, 1999. There are so many of you that I would like to write to and tell you how things have been going with her. It's so sad that not much is known about this disease. If you would like to write me, feel free to do so. You can also chat with me if you have ICQ. My ICQ number is 2711008. At the present time, my sister is in the hospital. Her lung has collapsed twice in two weeks. I told her about this website and she would love to hear from some of you once she is home. Her email address is cpjenkins@conninc.com. Her ICQ number is 20048857. I hope we can answer some questions that some of you might have.
April 25, 1999 - Doreen HELP; My mother-in-law was diagnosed with Sarcodosis and she has diabetes which has halted the prednisone treatment at present. Are there any other viable treatments for her that will not affect the diabetes? Also, are there any Sarcodosis specialists in the Hampton Roads, Virginia area (Hampton, Virginia Beach, Norfolk, Suffolk, Cheaseapeake). Any info would be greatly appreciated.