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September 25, 2002 - Jeneva My mom has been diagnosed with Sarcoidosis, and she has been experiencing symptoms of fatigue, loss of weight,and appetitite, along with shortness of breath. She has battled breast cancer, and currently battling lymphodema along with sarcoidosis. Due to the many pills consumed on a daily basis, the doctor does not want to start her with any new medication, but this seems inevitable. Are there any alternative medications available for this deadly disease?
September 16, 2002 - Mindy I have had sarcoid for several years. Prednisone has not helped. Today a new doctor suggested I try a cancer drug called methotrexate. Has anyone else had experience with this drug? The side affects don't seem to be as bad as steroid therapy which isn't working anyway. My voice, sinuses and lympyh nodes are affected and I have lumps under the skin on my arms. Please let me know if you know anything about this drug. Thanks.
September 16, 2002 - SACFoster I was diagnosed in 1998 after my primary care physician suspected sarcoid and referred me to the pulmonology Department of Charette Health Care Center at Portsmouth Naval Hospital. I'd seen my pcm several times for chest and armpit pain that tests revealed were not heart related. When I initially saw Dr. R, my pulmonologist, he performed no test, but, like my pcm, immediately suspected sarcoid. Neither Dr. R nor I saw any reason to begin medications; that remained the case until several breathing tests and x-rays determined that my sarcoid was progressing. Even so, because I fear its side effects, I've held fast to my decision not to take prednisone. I have consented, though, to taking the inhaled steroid flovent. No favorable changes have yet been noted. For the joint and muscle pain I often experience, I take (don't laugh because it helps) children's liquid tylenol. It of course does not help with any inflammation, but it does bring quick pain relief; not to mention the way it puts me quickly to sleep. About three weeks ago another breathing test and x-ray were performed. I'd all but forgotten I was supposed to call Dr. R for the results when he called one morning to say that my sarcoid still appeared to be worsening. Now he wants me to either consent to an open lung biopsy, to go on a trial of prednisone, or to consent to another bronchoscopy. The first two are out of the question, so since bronchoscopy is the lesser of the three evils a bronchoscopy it'll be. When I see Dr. R a week from now the procedure will be scheduled. I will make another post shortly afterwards. Thanks to each of you for your posts. I doubt that I would be as informed about sarcoidosis as I now am.
September 16, 2002 - Minnie Thank you all so very much for posting your comments on sarcodosis. I too have the disease and need to learn as much as I possibly can.
September 12, 2002 - Catherine I am a 52 years old African American female. I have had sarcoid for about eight years now. I am on no medications. The only way I learned I had it was due to a skin biopsy due to the reddish rash look on one side of my nose. I was referred to a Pulmonary Specialist in my area who basically monitors my condition with the yearly check-ups. He says I am in some kind of remission because my condition has not gotten any worst. By the way, my lungs were affected besides my nose. I wonder if there is any other treatment for my redness of my nose besides steroids which I don't want to use.
September 10, 2002 - JoAnn My son who is 33 years old has been diagnosed with menenges sarcoidosis, which is sarcoidosis of the lining of the brain. As you can see it has hit him in the prime of his life like the rest of you. The only thing that keeps him out of the hospital with menigitis (this is how the sarcoidosis affects him) is high doses of prednisone which has terrible side affects. As a concerned mother who has just lost her mother, I am searching everywhere for any information and help I can get. If anyone out there knows of a specialist in the Washington DC, Maryland or Virginia area please help me with the information. Thank you and God bless you all! I will keep each and every one of you in my prayers.
September 09, 2002 - I agree with AK. The bottom line is that medication is a quick and easy fix for disease. Please look into eating organic fruits and veggies, not meat products and stop eating unhealthy junk food. You are making the junk food industry and medical "profession" richer and none of these industries care if you live or die. Matter of fact, the longer you stay alive the more they can gauge your pockets. Let's see what happens if your medical insurance runs out. By the way, I was diagnosed with Lupus, both grandmothers and my mother died from the disease. I decided to change my diet/lifestyle and stop being naieve thinking the med industry is here to help me and my chronic fatigue and everything else is gone. Look into companies such as Herbalife and your local holistic heatlth centers for more details.
September 06, 2002 - Phil Has anyone tried a product called CMO (Cetylmyristoleate)? It's a dietary supplement derived from beef talun that has had much success with arthritis. There have also been cases where sarcoid has gone into remission. Please let me know if anyone has had luck with this as I too am looking hard for relief.
September 05, 2002 - Cherrie Hello, my mother is 53 years old and was diagnosed with Sarcoidois about a year ago; but for many years they thought she had Broncitus (forgive the spelling). When they did find out it was Sarcoidois, they still didn't give her any other kind of treatment beside inhalers. When I watched how she was losing weight rapidly, 30 lbs in least than 3 months, I had to search for something. I looked on many websites and found a dozen presciptions she can take, but not cure her disease. She showed this list to the doctors and they prescribed them for her. She gained her weight back and felt fine, but she still has her bad days. Just yesterday she had another visit at the clinic and they told her not only is the disease in her lungs, liver, and skin, but it's now in her stomach. Bad enough she's depressed (but hid it with smiles), that tore her up more so. It's really affecting me. I can't concentrate in school, because my mind is all on her health. I pray that they soon find a cure for everyone that's living with this disease. I believe if we fight for a cure and make this awareness BIG, that these doc's will get on their job and find a cure.
August 29, 2002 - Derek I began experiencing unexplained fatigue when I was 11 yrs. old. As the years passed it worsened into chronic fatigue which has kept me from achieving anything near my true potential. At 36 I was diagnosed with sarcoidosis after suffering from pneumonia. Although I suffered from the drowsiness and muscle fatigue I experience now. I did not experience any chest or breathing problems, except for not being able to hold my breath for very long when swimming. Also I had pretty good wind when running. I completed the police academy when I was 32 and it was pure hell at times. My question is if anyone can help, did my lung sarcoidosis begin when I was 11 or do I have some type of chronic fatigue caused by something else on top of the disease that I have now? Did anyone else have a similar experience thinking they had sarcoid long before being diagnosed? I need to know how many battles I have to fight. Good luck to all of you in your struggles.
August 29, 2002 - Terry Hello. I too have sarcoidosis. I have it on my skin, in my sinus passages, throat, lungs, heart, liver, spleen, kidneys, bladder, female parts, joints, muscles and more. I am 35 years old, born in the late 1960s. My father was military and the military was very insistant about trying to force my mother into placing me in a study group for disabled kids because supposedly I was a "breath holder." I can trace sarcoid back in my system until the time I was 11. But I also live in an area with one square mile that has 144 superfund sites because of chemical waste (Lakehurst NJ). The water supplies were known to be tainted at some point and there are a lot of other cases of sarcoidosis in people around my age group. I want to know if there is a study anywhere or a survery going on of small military children given vaccines? I have a feeling they used experimental vaccines on me. I can't prove it at this point and don't know how to get hold of the doccumentation I need on my vaccines. The military was extremely furious that my mother would not allow me in their test group. Something maybe top secret enough that it was disguised(?). They threatened my mother even with having me taken away from her to be part of this test group. I have a very serious case of sarcoisosis, very disabling, not in my lungs much but it has been there too. Currently it is attacking my joints and my muscles as well as my neuro system. I have done a lot of research on sarcoidosis and the only possible links I see are military involvement, chemical waste, and possibly asbestos from a local school. But asbestos causes a different disease completely. A lot of people take sarcoidosis lightly because most cases are mild. I have been suffering in hell since 1984. I have finally been diagnosed in 1992 but my granulomas were present since I was 10 or 11, in 1977-1978, visibly but not sure if they were ever noted at that time; we came from a poor family. After my parents divorced medical attention was only sought on an emergency basis. Once, as a teenager I was brought to a doctor for a rash that we later found to be caused by sarcoid as well. I have known 3 females with this disease, all local to my home town, all about my age, all military children, and one military police officer now retired in Florida.
August 27, 2002 - Pat On Aug 21 2002 I was finally diagnosed with SARCORDOSIS. I did not know what it was or is. The doctor admitted not enough is known about it. What can I do? I am separated with one teenage boy left at home. I am always so tired and in pain. My son says look something is wrong with her she lost weight, sleeps all the time, does not pay attention to anything. How can I, my body hurts. I laugh, I cough; I talk, I cough; go outdoors, I cough, so I sleep, I know I am getting depressed. Everything irritates me, my legs always hurt. I have pity parties all the time. I want to desperately start to feel like my old self. Help me please.
August 25, 2002 - Ann I have been treating Sarcordosis for a number of years and have found exercise, slight, to be beneficial but also Glucosamine Sulphate has been excellent for joint and general muscle mobility. This together with baths in Epsom salts - pure magnesium has been very good. I recently researched some Transfer factors and the results are exceptional. The transfer factor is from the colostrum so the Immunity information is present in pure form and this company has extracted the bovine and dairy molecule out of this colostrum rendering it totally natural with nothing harmful. Sime Immune system are boosting by up to 248%. It is something to look at and research and start feeding your Immune System and see what quality may result.
August 23, 2002 - Merilyn I was diagnosed 13 years ago. I experienced 18 months of severe weakness and discomfort. I couldn't sleep without a fan blowing air into my face. I felt I was suffocating all the time. Six of those months it seemed my major focus was getting from one day to the next, and dealing intensely with the discomfort and misery of the illness and the treatment, fevers, aches, weakness, personality change. I have been very fortunate to have moved completely away from that place in my life. I changed my diet, started exercising as my strength returned, and have enjoyed excellent health for the past ten years. Almost no colds or the usual minor infections that used to be so much a part of my life. About three months ago, I started breaking my own rules, missing sleep, skipping meals, over working, under tremendous pressure at work, in the final stressing stages of building a home, and before it was actually completed, we moved in and hosted 22 out-of-town guests for our son's wedding. I am a mess now, symptomatic and trying to pull myself back together. "Sorry body!" "Sorry body!" Both times, stress has been the culprit. Has anyone come across any information on personality typing for individuals with Sarc? My guess is we are a bit intense and tend to internalize our stress. Would like to hear from you and get your perspective.
August 20, 2002 - Louise I am a white, 63 year old, lady. I was diagnosed with Sarcoidosis in March, 2002, and placed on high doses of predisone which kept me up day and night. I finally had to ask for and beg for something to help me get some rest. Temazpan was prescribed which really helped. My dosage of predsone has been lessened over time now at 1/2 pill per day. I contiunue to be very tired most all the time, and have joint pain, visual distortion in one eye, and a rash around the mouth I cannot seem to get rid of. Tests show sarcoid in liver, lungs, and was in kidneys, which brought this whole illness to light when my kidneys were all but "shut down." I was admitted to the hospital on a Sunday morning in very bad shape. Today I am much better, but the tiredness continues to be a major issue. I just cannot do the things I could do. My mind wants to but my body will not let me. My breath just goes away and my voice gets very weak. And by the way, all this came upon me after an earlier severe auto crash. The condition has been gradual, and I believe the ingestion of all the chemicals from the airbags (which did physical damage themselves) and all the other fluids that are contained in the making and operation of an automobile. The smell was horrific as I braced myself against the seat waiting on the EMTs. I'm so glad we were in a large, heavy auto, for I do not believe we would have survived if in a small compact auto. The Ford 150 pick-up that ran out in front of us, we knocked the back wheels completely off the truck. We were all fortunate that we did not die. I thank my saviour and lord for that. My insurance company, Farm Bureau has not reimbursed us for the expenses we endured, even though it was not our fault. I don't understand that. I suppose we will have to go to court. No other recourse.
August 16, 2002 - Jacquelyn My name is Jackie and I have had sarcoidosis for 15 years; it has been a hard time. Does anyone know how one gets this?
August 11, 2002 - Randall My mother has Sarcoidosis. It was found in her lungs and her spleen. I would like to know about any real new treatments. Please, no herbal oriented treatments. I am looking for a doctor, or someone in the medical field, or better yet, a research scientist working on cures for illnesses, who is a real doctor who went into the field of medicine, to help, and not for money. I need material I can print for my mother. Any help will be of help, as we know nothing much about this illness. Thank you.
August 10, 2002 - Denise Hi, I was diagnoised with Sarcoid in 1992, by lung biopsy. I am now 47 years old, I have good days and bad, in the last three years it's gotten worse with cough, sweating,and chills. I've recently received an internal cardiac defibrillator (ICD). All the coughing caused irregular heart beats, in my case it was Vtach. Prednisone is the only first line drug I know of. Does anyone know of anything else that helps with the inflamation? I get so tired sometimes, I'm physically unable to do so many things. My faith in God has brought me a long way. I will continue to pray for a cure for us all. If anyone is using inhalers, ask your Doctor about a new one called Serevent, it helps me a lot. To all I say, be encouraged!
August 07, 2002 - Rachel After years of suffering from joint pains and various other ailments, my mother was last week diagnosed as having sarcoids on her liver. According to the specialist, to have them on your liver is rare and I am wondering if anyone else out there has suffered from this? Like many of you, she has begun a high dosage course of prednosone but is sceptical of the long term effects, i.e. weight gain, as she is already an asthma sufferer. I would like to hear from people of their experiences of this condition and I am annoyed that after years of complaining to her GP she was only referred to a specialist to "shut her up." Luckily she has private health cover or the process could have been delayed a few more years!
August 05, 2002 - Donnell Hello. I am a 37 year old male in the military and I have been diagnosed with sarcoidosis. I am truly afraid. I recently lost my mother to this disease (March 26 2002). She was only 56. I saw her go thru some things that I don't want to. She was on an oxygen tank and I saw her go from small to rather large. Now that I am on predisone I am in the same boat. Just last week I weighed 196 lbs and today I weigh 222 lbs. My body aches and breathing is still rather difficult. My unit is deploying here in the near future to Kuwait. How can I be an effective leader to my soldiers and my health is failing? Please help me with some answers.
August 05, 2002 - Tim I wonder what it would feel like not to be tired, does anybody know?
August 01, 2002 - Kathy I am a 43 year old black female with neurosarcoidosis. I was diagnoised with sarcoidosis 14 years ago. It was discovered in my lungs, when I was going through a physical for surgery. I had a biopsy. This disease bounces like a ball. I have had it in my lungs and in my eye. I had several surgeries on my eye and I have a vail in my right eye. I have had it in my legs. I now have what is called neurosarcoidosis. For this I am taking chemo treatments along with predisone. I have been on predisone for 14 years off and on. Every time I try and go off I get very sick. I was told that I am considered a chronic sarcoidosis patient and will be on predisone for the rest of my life. I have a sister who has sarcoidosis. She was diagnosed 18 years ago. She went into remission after being treated for one year. I regretfully say that when she did a study for my doctor about sibling with sarcoidosis she discovered that it had appeared in her lungs again. Now she has developed a rash on her face. I also have a male cousin who has sarcoidosis. I don't like taking predisone because of the side effects. I have been on dosages as high as 80mg. I was told that I was sensitive to steroids. If I can help anyone answer any questions I would be more than glad to do so. I feel very blessed, and I have been told by the five different doctors that I am lucky, but I don't feel lucky, I feel blessed. Hang in there and keep your faith. I feel if you fight it back and don't give up that is half the battle.
August 01, 2002 - Cindy I am 47 year old Africian Americian female who was diagnosed with Sarcodosis when I was in my late 20's. All the symptoms that you all have described I have had. Every night I pray and during the day I thank my heavenly Father that I'm alive and have been in remission for approximately 12 years maybe longer. I have a hard time trying to explain what is Sarcodosis. If anyone has any information please post.
July 31, 2002 - Thomas Hello you all. My Mother was recently diagnosed with sarcadoisis. She has not told me a lot involving her suffering; she thinks she is burdening me. Thank you all for letting me know some of the roads she may be travelling down in the future and how to help make them a little smoother. I am going to copy, print and highlight everyones symptoms and possible therapy. I appreciate your experiences and willingness to share them. Thank You
July 22, 2002 - Aldo I have just read letters regarding Sarcoidosis. I was diagnosed in 1983 and have now found out that Sarcoidosis was mistakenly diagnosed; what I actually have is BERYLLIOSIS. The appearance of lung lesions is the same. It is so unfortunate that it is taking so long for people to learn of this disease that comes from even the slightest inhalation of Beryllium dust; workers can even bring it home to their families. It is actually Beryllium Copper which many machinists such as myself have been exposed to in the workplace. Without proper precautions it can be fatal. Just search using the word Berylliosis and learn that you may not have Sarcoidosis at all. The National Jewish Hospital in Colorado is a great resourse; they do the blood testing for this disease.
July 20, 2002 - Wanda Hi my name is Wanda and I just found this site accidentally by typing in these words under search, ENLARGED LYMPHNODES IN THE LUNG. I am so excited as by logging onto this site I've learned there are so many suffering with this disease. I have recently been told I have it by my eye doctor. I spent 6 days in the hospital April 19-24 2002 and was discharged with a diagnosis of high sedimentation rate, low grade fever and inflamation of an unknown origin. I'm 56 years old and have pph already since 2000. I never had any trouble with my lungs ever until I was diagnosed with pph. went to the eye doctor in May and was told that he thought I had SARCOIDOSIS just by examining my right eye. In a matter of 3 minutes. he referred me onto a ph doctor and he did a CT scan of the lung and it shows my lymphnodes have minimal enlargement. The ph doc referred me to see a surgeon which I did this week, July 18th. he wants to make an incision in my throat and place a tube and light down to remove a sample of the lymphnode. I am very scared and frightened as up until I found this site I had no idea that so many people are afflicted with this disease. I would greatly welcome any emails from anyone who would like to get in touch with me. I live in West Virginia and have only found one person who has this disease so far. Thanks so much for this wonderful site that God has led me to tonight. hoping to hear from many who have voiced their comments here and shared with so many about this disease.
July 20, 2002 - Annie Hi! It has been an experience reading your symptoms and conditions. I have been diagnosed with sarcardosis in June 2002 but the last 2 weeks I have a problem with my neck and throat, sinus, ear, pain down my neck, and really lots of pain all over. My head hurts and I am really tired of taking mscotin and phenergan, davocet, xanax I want it all to stop hurting. I'm miserable. But thanks to you people I know I am not alone. I have been diagnosed within the last 2 years: squaomus cell skin cancer, discoid lupus -15 years, antiphospholipid antibody syndrome, which is a clotting disease, osteoporosis off the chart, severe depression, mental confusion, and fibromialgia. I'm tired! I have no engery. I don't want to do anything. People look at me and think I have nothing wrong with me, but I tell them they don't feel what's on the inside because we always look fine but to do any activity, you pay for it the next 3 days or more. Like running fever, aches and pain, muscles joints of bones, well you name it and you got it. I haven't been down except for the last week and this week because I have not been able to even go to town. I think I am ok and then boom it all falls right back or worse. Thanks a lot for your info and I hope I haven't bored you with mine. May God Bless each and everyone of you.
July 14, 2002 - Lauren TO: B. Taylor; Re: Daughter 16, (June 18, 2002) I also was 16 when I was first diagnosed with Sarcoid. They gave me 4 months to live. That was 26 years ago. I was one of the first cases ever documented. I actively teach Aerobics of all kinds for the last 27 years and feel that it is one of the reasons I am as well as I am today. Tell your daughter the weight gain is only temporary, it is mostly from the drugs she has to take to put the Sarcoid into remission. After this she will return to her normal body weight provided she maintains good eating habits.
July 14, 2002 - Donna I was dignosed with Sarcoidosis July, 2001. I don't really understand anything about it. I've stopped going to the doctor. I wish that someone would explain to me, why it's so important to go to the doctor every 3 months, have chest xrays. The doctor told me that it couldn't turn into cancer.
July 08, 2002 - Cynthia I am 53 years old female diagnosed with Sarcodosis three years ago. I had a terrible cough that would not go away and constantly had to spit up. I could not hold a conversation without coughing. After having a CT scan, MRI, Broncoscopy and pulmonary function test, Dr. Clifford from Loyola Hospital diagnosed me with sarcodosis. I am currently taking inhalers twice a day and claritin. I feel tired a lot and I don't know if this is part of the condition or not.