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December 28, 2000 - Ray My wife died from ovarian cancer 5 years ago, I could do nothing but watch her fail a little more each day. My son has been diagnosed with Sarcodosis within the past 4 years. I don't want to watch a similar fate for him. What is being done, "research" if any? What can I do to help make a difference? I saw Kelly Duffy on the Montel Williams show and praise her for what she is trying to do to help spread knowledge and interest in the general public, but she needs help. Research monies sometimes goes in the wrong directions. There has got to be something that can be done. Can find nothing in my city. I don't want to just sit by, not this time.
December 23, 2000 - Kevin Hello, my name is Kevin and I'm doing a little research for my Sister-in-law. She has recently been diagnosed with Pulmonary Sarcoidosis in South Louisiana, after the "you have it....you don't have it" scenario. Her Mother was recently diagnosed with it as well as sjorhens disease also. I would like any contact information for "INFORMED" Pulmonary Sarcoid Doctors in the South Louisiana or Houston Texas area. Her husband, my Brother is 100% disabled due to an auto accident and he can't handle travel for long distances. As you can imagine, this diagnosis has really wiped them both off their feet, their 15 year old daughter doensn't know yet. I would appreciate any information you may offer including government or public programs, as well as "qualified" pulmonary sarcoid specialists in our area. Thank you for your time and assistance! May you all be blessed with a cure.
December 12, 2000 - Lottie Hello my name is Lottie; I have Sarcordosis in my eye. The doctors here have never heard of it being in the eye. They put me on seriods and then they took me off. One doctor that specializes in sarcordosis put me on arthritis medicine which slows it down. They don't know why, but something in the arthritis medince slows it down. The eye doctor gave me drops and I take them every two hours and then he gave me steroid shots in the eye every two months. But we have to stop the shots because now I have cateractes in my eye. We are planning sugery in March and then we will see from there. I have very good Doctors and I believe in them and I think they look out for the best for me. Thank you for your time.
December 05, 2000 - Han de Vries I've been treated for sarcoidosis in 1992, after having uveitis (eye inflammation) on both eyes consequtively. Before contracting this disease I used to live in Paris for almost two years, a town that is full of diesel fumes (French cars are often running on diesel, and pollution is not a big issue there). I always suspected that my sarcoidosis had something to do with this Parisian air pollution. Later on I read that diesel is able to upset the immune system. Is there anyone who can make the same link between sarcoidosis and Diesel exhaust fumes, or any other related carbohydrate? Sometimes spray cans use propane and butane as propellants; they seem related to diesel and are also indicated in relation with Sarcoidosis.
December 05, 2000 - June I'm looking for some information about what I might have see. I have this lump on the side of my lung and it is starting to hurt my breathing and I was wondering if you have anything I can use. Thank you. Ms. June
November 30, 2000 - Billie I have been reading once again to the situations all of you are in and am right in there with you. In 1994 I was hospitalized for 3 weeks for an undiagnosed illness which was later determined to be Sarcoidosis. A lesion the size of a golf ball was removed from my left lung, and the rest of my lungs were covered in "enumerable lesions." I was put on large doses of IV steriods, and the doctors told me several times that they didn't know how they were going to keep me alive. The sarcoid diagnosis explained all of the previous ailments I had had such as kidney stones, rheumatoid arthritis, migraines, etc. My purpose in telling you all of this is not to vent but to let you know how much relief I have gotten for my arthritis from Glucosamine Chondritin. I still have to take steroids and Plaquenil, but I started taking the Glucosamine about a year ago. It is an over-the-counter medication, but my internist told me it might help. I didn't expect much, if anything, but I was so wrong. It took about 2 months for it to work completely, but I did notice some improvement after about a month. Now, if I run out of it, not only do I hurt -- you can hear my knee cruching when I walk. I highly recommend this stuff. It can't hurt to try it, and I have only talked to one person who did not get any relief from it. It is available at all the pharmacies I have seen and at large discount stores. I wish you all the best of luck.
November 25, 2000 - Lynette Hello. I've just today began researching Sarcoid on the web. I am a 59 yr. old caucasian woman diagnosed with Sarcoidosis in June of 1999. I had felt chest discomfort over a period of a year or two, but the week prior to the diagnosis, symptoms were worse. I ended up in the ER of a local hospital where, among other tests, a chest xray was given. The ER doc put the xray up and I could see huge white, egg-like things sitting right on my lungs. The doc said it could be cancer or some other disease, but further tests by specialists were needed. I took the xrays to the Veterans Admin. Med Ctr., where I talked with an excellent internal medicine physician who explained all the possibles and tests for them. I underwent a broncoscopy, which was inconclusive. Then, underwent a medianstenoscopy which confirmed Sarcoid. I was convinced I had cancer, so was relieved with this diagnosis even though I didn't know anything of it. I was eventually referred to the chief of pulmonary medicine, who sat me down and pretty thourghly told me all about this disease (as much as they know). He recommended against prednizone unless absolutely necessary because of its side affects. I have a chest xray, PFTs every 3-4 months (since 10/99); completed an MRI of chest (10/00) which I had to ask for, and this month an eye exam and mapping. I think I got a pretty good explanation of eye symptoms of this disease. Like many of the rest of you, I looked at medical books for Sarcoid info and found little. I looked for a support group (found none). Live in the Mountain West. I figured the web would have most information and that seems to be the case. It seems many of the side symptoms other people have experienced could be taken as fibromyalgia, which is another vague disease medical people think is auto-immune linked. I have been taking amytriptaline for this for a couple of years (a common Rx help), and other medications over the past ten years for arthritic problems. I have a lot of coughing, some fatigue (on and off), achiness, sometines chest discomfort: all symptoms many of us have described. I was particularly interested in what other Sarcoid sufferers have experienced regarding Rx, prednizone, disease progress or stabilization. The medical books all seem to say it runs its course and goes away - ha!- for most people. I do think a good positive mental attitude, mild exercise, and as stress free a life as you can manage really, really help. Good luck and thank you to all who've posted your experience with Sarcoidosis. You've helped me a lot!!
November 16, 2000 - Bobbie Hello! In 1983, I was diagnosed with sarcardosis. It has been a very long journey for me. I was 27 years old at the time. I am now 44 years old. I believe that this year has been my worst year. The constant run down feeling, muscle pain, sinus headaches and nose bleeds. My doctor prescribed steroids at different stages for treatment. At present, I've decided not to take this medication anymore. I was not happy with the way I felt, nor did I feel like it was helping the pain. I decided to live my life to the fullest, pain or no pain. I have a wonderful husband, two children and at present teach computer classes at a high school. Some days I want to run away because of the pain in my joints. I give 100% to my students. They will probably have to drag me out to go on disability. I love my students. I have many times asked why me. But why not me. Maybe this is my purpose, to be strength to others. But sometimes I need strength. I wonder if there will ever be a cure for this disease? When I was first diagnosed, I thought that I only had a short time on this earth. It has been 17 years and I'm still here. Thank God for that. I can joke about sometimes because I'm blessed to have endured for so long. I can't do some of the things that I used to, especially bowl. I love to bowl, but picking the ball up causes such pain. I appreciate this comment section and would love to hear from others. My greatest fear is that I may become disabled and not be the kind of mother that I really want to be. I decided to look up some information on sarcardosis tonight on the internet and ran across this comment section. I was looking for some information on foods to avoid, vitamins that have proven beneficial to other sufferers. The sinus attact are about to get next to me but I'll make it. If anyone wants to correspond with me, my E-mail is listed and maybe we can come up with some ideas for survival. Take care, keep the faith, hold on and remember to pray for me and I will pray for you. Love Bobbie
November 09, 2000 - Renee I was just diagnosed with sarcoidosis. An MRI showed bone lesions; and a lymph node biopsy showed sarcoidosis, (first suspected but not confermed in '92). Anyone know a good doctor in the Johnstown/ Altoona/ Pittsburgh PA area?
November 07, 2000 - Loreen I was diagnosed in 1991 with sarcoids. It is the most debilitating illness one can have. Most people are unaware the disease exists and many believe it exists only in one's mind, although the irony of that statement is that it can exist in one's brain. I believe that my husband left me because he thinks I was faking an illness. How I wish that were true!!!
October 30, 2000 - Laura I am a 37 year old female. I was diagnosed with sarcoidosis almost four years ago. Originally it effected my joints (swelling and bruising and severe pain) which led my doctor to refer me to a rheumatologist who immediately suspected sarcoidosis. Subsequent x-rays, ct scan, and mediastinoscopy confirmed the diagnosis. After a short course of steroids my symptoms abated dramatically. Not long after, I started running fevers (usually 101-102) daily. This lasted for about a year. I also had elevated liver enzymes at this time. It was assumed that the sarcoid had also effected my liver but we opted not to treat it since I really didn't like the prednisone and was coping with the fevers. About three years ago I started developing some neurologic symptoms (head-aches, bright flashing lights that wouldn't go away, asymmetric reflexes..) and an MRI revealed small sarcoid lesions throughout my brain. IV solu-medrol treatments and months of high dose steroids caused the symptoms to abate, however I then started developing electric sensations along my spinal cord. More MRIs revealed many lesions along my spinal cord beginning as high as C1. An exacerbation May of 1999 left me in lancinating pain and unable to walk for several months. After therapy the symptoms got better, but I was left with deficits this time. At this time a liver biopsy also revealed that in addition to sarcoidosis in my liver I also have Primary Biliary Cirrhosis (another auto-immune disease) as well. For the past two years I have had several courses of IV Solu medrol, many months of high dose prednisone (as high as 100 mg per day) Methotrexate IM injections weekly which made me very sick (and which were ineffective)...I am currently taking 20 mg prednisone daily, 150mg immuran daily along with many other meds for handling side-effects etc. I have many aches and pains, have gained 30 pounds from the steroids, osteoporosis as a result of the steroids, I catch every cold etc.. that comes down the pike despite daily antibiotic therapy for profilaxis. My vision is blurred, my hearing is decreased, my balance is off, and I don't have good feeling for where my feet are (I fell down the stairs just the other day). I have seen one of the best specialists in the country who referred me to the doctor I see currently. He is very optimistic that the disease will run it's course and has the utmost faith in the medicines--that they will work. I believe him, he's very knowledgeable and comforting, but in the meantime I am becoming very discouraged. It seems like it's always something. I never feel good, at least not for long, and am so exhausted all the time. I sometimes just feel like a big hypochondriac, although I know I'm not one, but I get tired of hearing myself complain. I've been unable to work and feel very lonely and useless. I guess this is very long, but what I'm asking is if anyone else has had any of these things happen to them and/or feels the same way I do. I'd love to talk to someone who can relate.
October 17, 2000 - Bob I was diagnosed (by accident) with Sarcoidosis in 1997. I have only had hypercalcemia until this year. Have had four kidney stones in less than three years. This year, however, is different. I now have an enlarged spleen, high ACE level for the first time, lung depression and possible liver involvement. Am on Prednizone for this. Have also had severe left abdominal and testicle pain but no stone ever found, still trying to determine the cause of this pain. Am wondering if anyone else has had abdominal pain with Sarcoid and what the actual cause might have been. Any sarcoid patient please feel free to post a response. Best to all who suffer from this unusual disease.
October 14, 2000 - Laura I have just discovered your site. It is very interesting to read about all the various systems. I am currently at level 4. My doctor tells me there is no higher level, so I just live each day as I receive it. I have done meditation, which certainly makes me feel better spiritually and therefore must help physically. I do not take any prescribed medication as it did not help me any for the eight years I was taking regular low dosage treatment. My breathing is quite laboured most times; however, my doctor advised me that as long as I up to doing so I could do anything I wanted phyically. I attempt to walk every second day, albeit slowly. I garden, maintain my two story home, etc. As of yet I do not need oxygen therapy, although at 92% breathing capacity I do not know how long this priviledge will last. I do tend to get tired easily and had to give up my business and job. I have adjusted to this. Generally I feel that as long as the Good Lord allows I will enjoy all the life and wonders that He sends me each day. I am also thankful for a very supportive husband and children. Be at peace with this disease and you will be able to accomplish much.
October 05, 2000 - Gabrielle Hi, I'm trying to get in touch with Takis from Greece. I was recently diagnosed with sarcoidosis when I had a chest x-ray to get my visa to teach in China. It was a bit of a rush so the doctor diagnosed on the basis of my ACE level test; there was no biopsy. Both the pulmonologist and the oncologist recommended that I bring my x-ray and CT scan films with me to China and have periodic x-rays while I'm here. If the adenopathy in my chest changes, I'll have to have a biopsy. Before living here, I lived in Greece for three years and I plan to go back during my Christmas holidays. I'd like to see a doctor while I'm there. I've written to one doctor who I know is an expert on sarcoidosis, but I've received no reply. I need to find a doctor in Greece and make an appointment. I'm hoping Takis can help me.