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June 18, 2002 - Denise I am desperately needing some help in finding a cure for my husband's diagnosis with sarcoid. He is suffering very badly. The doctors here in Tipton County just keep writing prescriptions and he's still in severe pain. He also goes to a lung specialist who is trying hard to study up on his case. He needs to go somewhere out of state or find another doctor or some good medicine to cure this disease. He has flare ups all the time. His whole body is tearing apart.
June 18, 2002 - B. Taylor My daughter is almost 16 and was diagnosed with sarcoidosis in April 2002. I've read all these comments and have yet to see info. from someone this young. I understand that pediatric sarcoidosis is even more rare than adult sarcoidosis. From June 2001 to March 2002 her spleen became greater than 4x normal size and enlarged lymph nodes throughout the trunk of her body - especially in the lungs. From June 2001 to Feb 2002 she looked felt and acted just fine. But her spleen kept growing. Then after getting the "flu" in Feb 2002, she started getting sicker and developed chronic laryngitis for 2 months and seemed to have a constant low grade fever. She started slipping in her school work. Her doctor at National Jewish in Denver diagnosed sarcoidosis in March and started with 40 mg of prednisone per day. She also uses an inhaler twice a day (Advair) and takes fosomax once a week (since the prednisone leaches the calcium from your bones). Immediately she became more energetic and focused on school work. Within the week, her face shape was changing. After 3 weeks, she noticed her hand would sometimes shake, daily dizzy spells, and had short term memory loss. So May 1st she went to 40mg/30mg/40/30/40/30mg alternating days. Then May 15 could reduce to 40/20/40/20/mg. It's been about 2 to 3 months and she's gained 40 lbs. Friends who knew her well but had not seen her in a while, recently did not know who she was. I hate having her on the prednisone but it seems that's the drug of choice. Her doctor checked her in April and said her spleen has definitely gone down- though still enlarged, and her lung function was fantastic. She had her 5th CT scan last week and we'll meet with the doctor July 9th. I guess the prednisone is helping lessen the sarcoidosis symptoms inside. I just hope that she can continue to taper off of it and hopefully the sarcoidosis symptoms won't return. If anyone has any experiances or info about pediatric sarcoidosis, I'd like to hear about it. The weight gain is really alarming me! Will it slow down as the prednisone is lessened, or will it get progressively worse as long as she's on it at all?
June 14, 2002 - Betty I was first diagnosed with sarcoid in 1996 while being treated for iritis. I suffered with shortness of breath and bruises on my legs. After only a few months of treatment with prednisone all of my symptoms disappeared. Thankfully I remained symptom free up until about a month ago when I developed swelling of the lymph glands in my throat. While I will start treatment again in a few days, I believe that a healthy diet, plenty of exercise and a stress free enviornment do as much as any medication in controlling this illness. I think sharing our experiences with this unpredictable affliction is very upbuilding and encouraging. Fear of the unknown can sometimes be more harmful than anything else. My prayer is for all to stay strong in mind, heart and body.
June 14, 2002 - Karen Hi, I was looking for information about detox and the experiences of others who are experiencing the effects on the skin. I injured myself working and have repetitive strain injury to my upper body, chronic pain, fibromyalgia, and had a stroke caused by a bleed on the left side of my brain. It goes on and on, so I am with you all out there, let keep searching for the answers. I am sick of being sick and started searching for answers. I discovered I have problems with food. I start a change of diet and so did my children, a year ago. We eat lots of fruit and vegetables, organic if possible to buy. We drink lots of juices and especially fresh lemon juice. We do not eat gluten any more, if you want a understanding of this food and related problems check out Celiac Disease. We are all experiencing health improvements. I read plenty about holistic medicine and I believe this is the right way for me to go. There is a sight cure zone on the web for those who are looking to take their health in tier own hands or just looking for better understanding of health problems. I also read a great book by Dr. Bernard Jensen ( Dr.Jensen's guide to better bowel care ) This book was inlighting and there is also has a web site in his name. I would love to talk with others looking for the answers, and souls like me who are strong and determined to win.
June 11, 2002 - Karen I have sarcoid of the lung and now I'm having problems with the liver. I'm scared. No body believes that you're not feeling well because you look fine. My body hurts all the time. Someone please post info on sarcoid of the liver or good doctor to see.
June 07, 2002 - Michelle I was reading all your comments about sarcoidosis. When I had it in 1992 I was all alone with this, no one knew anything about it. I was on high doses of prednisone for 2 years. Gained 30 lbs, became moon face, lost half of my hair, but my hair grew back. I had to move my young family from Ontario to B.C. because I cannot take the cold weather anymore. It has been 10 years and I have been a lot better. Moving to a warmer area was the best thing I did. I found that prednisone was harder on me than the sarcoid.
June 06, 2002 - Lillian I am a daughter of a 61 year old mother who has sarcoidosis and I wonder how does someone get something like this and what degree good and bad can this go to?
June 03, 2002 - John Don't take melatonin - it changes your face. I foolishly took the drug for 2 years at twice the dosage to fight insomnia. I had a model perfect face before but now "lost" my face structure and my face appears fat.
May 31, 2002 - Donna I am a 48 year old female. After 2 years of numerous MRI's, Blood Work, EEG's and Spinals, for never ending migraines, weakness, memory loss, and overall weakness, the combination of my Immune Complex level and ACE levels being elevated, I was diagnosed with Neuro Sarcoidosis. I am currently taking numerous medications, one being the ever dreaded prednisone which has piled on unwanted weight. If anyone can tell me where to find more information on Neuro Sarcoid, I would greatly appreciate it. I have been told Neuro is very hard to diagnose, I have also been told it's genetic. Thank You to anyone who can help me find more information.
May 24, 2002 - Patricia I have recently been told that my lung sarcoid is not a skin disorder. I am looking for as much information on this disorder as possible. Can you provide me with information or tell me where to look on the web.
May 23, 2002 - Darlene I was diagnosed about two years ago. I woke up early one morning with pain radiating from the back of my eyes. I thought it was stress because I was going through major crap with my husband. When I got up to go to the bathroom the pain became worse. I could barely open my eyes and when I did manage to open my eyes the pain was the worst. I made an appointment with the eye doctor who then suggested that I go to an eye specialist. He first told me that I had the illness. I made an appointment with my doctor and she confirmed his diagnois. I was feeling bad for awhile but I again thought it was stress from the marriage. I have flare-ups every now and then; plus my lungs are affected also. I take medication for my eyes (steriods).
May 19, 2002 - Perry My sister has had sarcoidosis for over 20 years. She is on oxygen and is getting weaker because the oxygen level in her body is getting very low. What can I do or where can we search to increase the oxygen in her cells or body? She is getting weaker by the day. She is taking oxygen daily at the maximum amount but she is not responding very well. Please help us.
May 18, 2002 - Chris I'm a 43 year old white male, 90% diagnosis of sarcoidosis in Sept 2000 through tiredness (not extreme as some here) and dry cough/throat irritation, resulting in chest x-ray revealing enlarged lymph nodes in lungs. Oct 2000 Specialist put me on Prednisolone 50mg one week, 40mg 2 weeks, 30mg 3 weeks and so on, dropping to 2.5mg every second day by Sept 2001. Tiredness disappeared, only to gradually re-appear in brief episodes toward end of treatment, along with throat irritation. April 2002 CT scan showed interstitial inflammation in lungs, characteristic I believe of second stage sarc. Back on Prednisolone May 2002. June 2001 Blood Chemist/Nutritionist found: 'roulot'(sp?) of red corpuscles - put me on course of fat metaboliser (amylase protease lipase) to fix fat/protein digestion (otherwise ruolot robs immune system?) and omega-3 oils and multi-vitamins (I had always had multi-vitamins) also always take folic, siberian ginseng, anti-oxidant mix, and pray. Try to keep to low-sugar diet. Now trying 20-30ml of Aloe Vera extract juice per day due to anti-inflammatory nature, via digestive helping action. Happy to have some discussions.
May 16, 2002 - Kasheba I am visiting this site for my mother. She has been diagonised with Sarcoid and she is 24 hour oxygen. It really scares me because I have watched her change dramatically over the past 5 years. I have to commend her on her strength because she is still the matron in the family despite the illness. There are so many things happening to her body that she does not understand and I wanted to find out if they are associated with the disease. I really love my mom and I hate what this diease is doing to her. I am going to make sure she visits this website and others like it so that she will not feel alone. Thank you for your support. May the Lord be with you all in all that you do and I will add you to my prayers. Remember the battle is not yours, it's the Lord's. Peace
May 16, 2002 - Colleen Hi, my name is Colleen. I've been told I have sarcoidosis. I never heard of this before now. Thank you to all of you for making me feel I'm not the only one. I'm just upset now that no one knows anything about this. I'm 42 years old and a white female, not that this makes a difference from what I'm reading. I just had a the lumps in my lungs checked for cancer; there was no cancer found. But now I'm like most of you; where do we go from here. I'm lost. You think with all the doctores in the world they would find out more about sarcoidosis. Thanks to all of you for the letters.
May 16, 2002 - Jeanine Hi, my husband was just diagnosed with sarcoidosis. Honestly, I am scared to death! My niece's aunt died of this disease 7 years ago, she was 32 years old with 3 young boys. My husband's facial skin has changed. I noticed that he is getting darker and I am getting more and more concerned. He has a chronic cough that has existed for about 6 months. I told him to be tested for TB, however, when he went to his doctor, she sent him for numerous testing, one was a MRI which revealed sarcodosis. Is the only treatment prednisone? He is currently on prednisone from a previous surgery (throat surgery), he continues to smoke, which is not good but what can I do?
May 15, 2002 - Deborah I was diagnosed with sarcoidosis of the lungs, liver, and spleen in 1977 and had my spleen removed in 1981. I have had 3 liver biopsies, was on predisone, and was always in and out of the hospital because of this sickness. It went away in 1990 and never came back until now. It is in my left lung and I'm having a hard time breathing again because of sarcodosis. I am getting treatment for it for the past 3 months. I am out of work a lot due to this sickness. I hope I can overcome this sickness like before. With god's grace I will overcome it.
May 09, 2002 - Diann I'm a 28 yr old white female, and I'm going to have a broncoscopy in 2 days. I have several enlarged lymph nodes and unidentifiable spots in my lungs, that look like tumors. My doctor says I have sarcoid or cancer or both. I can't take a deep breath; the lymph nodes in my throat are so big they make it hard to swallow or breathe. I've had a lot of joint pain and exhaustion so severe that I can't even move my arms or legs. I'm hoping I only have sarcoid and not cancer, but I think the sarcoid is certainly bad enough. Thank you to whoever started this website
May 08, 2002 - Lewis I am a vietnam viet. I like to know if sarcodosis is related to agent orange?
May 03, 2002 - Cary I am a 35 year old man, I recently was diagnosed sarcardosis, and so far I have gotten no support. My family keeps asking me what is the problem and many other questions about my condition. This is very hard because I don't know enough about it myself. When I first got sick it was the hardest. Because I had to accept it first. I kept asking why me, but the answer is,"why not?". Now people are scared to be around me which don't bother me but the thing that gets to me is how they make judgements without knowing me. Maybe I'm in the wrong part of the world or are they like that all over this place? Some people are so mean. Most of the good poeple I talk to say just leave people like that alone. I would but all of the real bad comments come from family, well biologicaly anyway they don't fit the defination of family. If there was somewhere to go then I would. So hopefully I can find someone who can send me informtion on this or someone to talk to that can help. Doctors names or support groups or any help that is avaliable. I keep praying in my heart and hope on my mind, God bless.
May 01, 2002 - Alvin I'm a 38 year old black male that has been receiving treatment for sarco. I learned, I had the disease in Sept.2001. I was placed on medical leave at work, and my doctor put me on prednisone 20mg I went from a lean 205 lb to 238 in a few weeks. I have the shortness of breath, slugessness and mood swings, but my best defense has been prayer and confessing, what the bible said about healing. There is hope for all who have sarco. We just have to hold on to our faith. I will keep you all in my prayers. Isaiah 53:5 (by Jesus Stripes we were Healed).
April 29, 2002 - Winnie Why do I get a terrible taste and smell after I take predizone? It last for a few days after I'm done with the medicine.
April 22, 2002 - Mel I was diagnosed with sarcoid in Nov, 2000 with a lung biopsy. Within the last year and a half I've been hospitalized about a month and some weeks. In March, 2001 I passed out at home once and then behind the wheel of my car. I then found out I had cardiac sarcoid also and had a pacemaker/defibrillator implanted. I have since passed out again in Jan, 2002 and took a trip out to The Natonal Jewish Center in Denver. I now have a team of about 6 specialists following my case and I am still having SEVERE chest pain and shortness of breath. I am also tired all of the time. Exhausted actually. Anyway I am going to probably be on Prednisone for the rest of my life being that this is the only drug known to doctors to treat cardiac sarcoid, but since I cannot tolerate high doses I am also taking methotrexate. If this doesn't work it is cytoxin (Yuk). Thank you guys for letting me vent and I hope they will find a cure for this mentally and physically disabling disease soon. Gob bless you all and stay healthy.
April 18, 2002 - Maddy I'm a 44 year old female diagnosed with Sarcoidosis in 1995. My symptoms were difficulty breathing, like someone was stepping on my chest and chest, back pain & weight loss. It was difficult to diagnose what I had at first. My doctor thought it was bronchitis, so I was given antibiotics. The doctors also thought it was Tuberculosis or Lupus. When that didn't seem to help my doctor decided to take an x-ray. That's when he decided to send me to a lung specialist who explained to me what I had. I also had a lung biospy which also confirmed the disease. It was very scary, because the doctor did not know how I got Sarcoid. I have been in "remission" for about 3-4 years. But I'm not sure I am in remission for I have had so many other health problems, but each time I explain to my doctor what I'm feeling, he tells me it's not associated with the disease. I'm sure it is. Ever since I was diagnosed with Sarcoid I have kidney stones, fat lumps on my body (possible hemotoma), high cholestrol, high blood pressure, blurry vision, heart murmur, iron deficiency and unable to lose weight even though I'm eating better and exercising. I have been able to use the theory "Mind over Matter" to better myself, but I continue to visit the Sarcoid Clinic in Mt. Sinai Hospital in Manhattan, NY every year. I used to attend Sarcoid Meetings, but have not done so in a long time. I am hoping and praying to GOD that I will continue with my remission. I have read other peoples' stories and have seen that some have been in remission only to have had Sarcoid return, but I'm hoping and praying that they all get better. Let's not forget to pray, for those of us that do, and hopefully there will be some kind of relief for us.
April 15, 2002 - Lanette My dad was diagnosed with sarcardosis about 3 1/2 years ago. He has it in his lungs. When I found out I immediately went on the internet to find out more information about it because for a 12 year old girl being told my dad had a terminal illness was very scary. I live in the bay area of California. I really would want to find out more information about all of this because I want to know how to find out a reason to have more information to share with my family. My father is married and has 3 children....all girls. I am the youngest. My older sister is married with two children. I want to be able to take pictures of my father and his grandchildren. With this illness it worries me along with the rest of my family. I would just like to say that a cure needs to hurry up and be found. I wish all the other people in the world with this illness luck, and a wonderful joyful life. May god bless the people who have to deal with all of this on a daily basis.
April 15, 2002 - Alicia I was diagnosed in 1989 and to this day not much is known about sarcoidosis. My 6ft 4in. tall 240lbs. brother almost died with it before they could diagnose him in 1996 and his weight dropped to 160lbs. in a 2 week period. In 2002 Ms.Duffy the super model was on the Montel Williams show to bring not only national recognition to this horrible illness, but also to announce that she has it. I myself am giving a big benefit for this illness Aug. 3, 2002 in Manhattan. So fellow sarcoid sufferers put the word out and let's get something done.
April 5, 2002 - Elsie I have been on predisone for l year for sarcoidosis in my lungs, lymph system, and spleen. I am now coming off 5 mg. I have had sweats and a cough, I hate the drug route. Has anyone done the melatonin route? I have really bad allergies now that the steriods were covering up. I would like any suggestions. Thanks