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August 21, 1997 - Glenda I am a 42-year old female diagnosed with a cataract in my left eye ten months ago. During an exam by my Opthalmologist, he found I had an inflamation in both eyes. The word "sarcoid" was mentioned so I decided to surf the Net looking for an explanation of this disease. I have had a TB test, blood work, and chest x-ray, and all were normal. However, doctors have been known to mis-diagnose or miss something altogether. That is why I am looking to the Net for information. I am interested in finding out if inflammation in the eyes is enough of a symptom to cause concern and possibly look to further tests. Any input would be greatly appreciated.
August 19, 1997 - Dr. Rodolfo Becerra Soy Rodolfo Becerra Barreiro, profesor de la Facultad de Leyes y estoy enfermo de sarcoidosis en su estadio I. Quisiera saber más sobre la enfermedad, no conozco de sus origenes, sus causas, si es hereditaria y sus consecuencias, si es pobible enviar direcciones en las que exista información en español. Muchas gracias. Editor's Translation: I am Rodolfo Becerra Barreiro, Professor of Law. I was diagnosed with Sarcoidosis, Stage I, and I would like to know the origin, causes, if it is hereditary, and consequences of the illness. Please send me addresses where they can provide me with information in Spanish if possible. Thank You.
August 13, 1997 - Sheri Dear Sarcoid sufferers, my daughter is a 19 year old caucasion, wife and mother of twin 3 year old boys. She doesn't have access to the internet so I'm writing for her. She was diagnosed with sarcoidosis one year ago April. We found out purely by accident. She was driving and got something in her eye, and realized she couldn't see well out of the other eye. She has worn glasses for several years, and thought her perscription needed to be changed. She made an appointment, which took a month or better, to get in to the eye doctor. The eye doctor immediatly after examination sent her to the University Medical Center to have an MRI. We took her there and an eye specialist determined she had Optic Neuritis and told us she could aquire MS over the next 3 years. Then, after blood tests and numerous visits and almost total loss of vision in one eye, she was told she had sarcoidosis. She was then placed on prednisone at 40 mg a day and then tappered down to 5 mg a day and then none. This was over a 7 month period, being totally off prednisone by February 97. Easter Sunday is when the real nightmare started. She became very ill to the extent it took serveral of us to get her from the bathroom to the ambulance cart, her blood pressure bottomed out, vomiting, eyes rolling, loss of strength to even hold up her head. She has had several episodes like this, and has lost most strength in her legs and balance. We took her to a Neuroligist and they did another MRI and told us it was a tumor and not sarcoid. We were referred to a Neurosurgeon, who said "No this isn't a tumor, this is Sarcoidoisis." We were then referred to a Rheumotologist. They put her back on prednisone at 80 mg a day and she's going thru a battery of tests and scans. She's been on prednisone for one week today and feels like a new person. Prednisone may have side effects but you have no idea what she's like without it. I only hope she can be cut back to a normal dose without complications. She has had no trouble with her lungs like so many of you, but we have an appointment with a pulmonary specialist next. They are trying to find a place to do a biopsy. She had a head, neck, and spine MRI last night, and next week we go for a gallium scan. If anyone has experienced a gallium scan please let me know what to expect. Well, I guess I have taken up enough of your time and enough space, but once I get started, I can't stop. This is such a major thing I cant believe we have never heard of it before now. We live in Central Missouri and I have found no support groups. If anyone has any information on support groups in our area or how I might start one myself please write. I think it would really be beneficial to my daughter to be able to talk to other people with this problem. "Good Luck To All Of You"
August 10, 1997 - Anonymous I am a 54 years old male suffering from Sarcoidosis of the lungs. It was diagnosed 30 years ago and has progressively gotten worse. I was on heavy doses of Prednisone which resulted in bad side effects including high blood pressure. I am desperately looking for some alternate treatments like Chinese herbal treatment or Homeopathy. If any one has some information on these, please contact me.
August 8, 1997 - Pat I am new to the internet, and was excited to find this site. I am an RN who has a friend who has asked me for help in finding some information for his wife (a caucasian female, late 40s). She has had Sarcoidosis for several years. Despite traditional therapies, visits to the Mayo Clinic, and a variety of alternative, homeopathic therapies, she has had a steady deterioration including neurological involvement/lesions. Some of her many symptoms include deafness, incontinence, and visual impairment. We are trying to locate a doctor or medical insitution who has experience with neuro sarcoid. I saw a recent TV program about a woman in NY who was treated with Methotrexate for neuro lesions. Does anyone have any new information that might be helpful? I was touched by your sharing of your experiences with this miserable illness. I wish all of you well, and look forward to hearing from you.
August 2, 1997 - C. Horton I have scarcoid and I am a 40 year old African American woman. This is the first time I've visited this site. The information has been extremely helpful to me. It is also good to speak to others with the same disease and be able to share good and bad times. It also helps to know that there are others out there who understand what you are going through. Thank you for being there.
July 31, 1997 - C. Painter I have just recently been introduced to the world of autoimmune disease. I have Lupus and am scheduled for surgery next week to determine why the lymph nodes in my chest are enlarged. If anyone has any helpful information on autoimmune problems, please E-mail me.
July 30, 1997 - H. Shaw I just went for mediastinoscopy to diagnose sarcoid three days ago. I'm only 25 years old, white female - and my onset of acute symptoms was very sudden. One month ago I woke up with severe pain in feet and knees. The pain continued to spread through out my joints and by the beginning of the 2nd week, my ankles had blown up like balloons. At first my primary physician wrote it all off as viral arthritis, but fortunately she had the sense to send me to a rheumatologist. The rheumatologist recognized the symptoms as possible sarcoid and sent me for an X-ray of the chest. X-ray came back with nodules in both lungs and hilar prominence. Went for a CAT scan that confirmed multiple nodules. The mediastinoscopy was performed to rule out lymphoma, granulomatous disease, or sarcoid. So now it looks like sarcoid. This diagnosis answers many unanswered, unconnected medical maladies which I have suffered from for years - by the way, a chest X-ray which I had performed last year previously read as clear, has been re-evaluated as possibly showing signs even then. I have been off and on antibiotics for many years due to chronic reoccurring sinus infections. I have had several sigmoidoscopies one of which turned up unexplainable ulcer tissue. These, and my severe PMS symptoms have always been written off as stress. Interestingly enough, in my short 25 years, I have had 3 hernia repairs - now though, all these symptoms seem to fit together with the sarcoid - the question is how long have I had this, and what kind of prognosis might I be looking at. Now, I am dealing with the joint pain, awful headaches, a strange swelling on my forehead, messed up menstrual cycles, neck aches, pain in the right upper quadrant (liver?), and the pain of the incision from the surgery. I wouldn't have known about the nodules in my lungs, as I don't feel any pain - but I worry about the future. Interestingly enough, my grandmother and her brother both died of interstitial pulmonary lung disease. There is a researcher at the U. of Washington researching our family, he has said that this interstitial disease is familial - it may carry a 50% chance for being carried genetically - now though I start wondering if it might not have been sarcoid? My physicians are treating each symptom individually, instead of looking at the whole disease - its very frustrating! I wish to find someone who has more experience with sarcoid. Any recommendations would be appreciated. Reading everyone else's experiences, I really don't want to start on prednisone. Please let me know your ideas, Best wishes for all of you.
T. Falkenberg I have tried chinese acupuncture for 1 month now, and I am getting better. My lungs are getting stronger, I am not so tired and my spleen is getting softer and smaller. Chinese acupuncture is not an alternative in China, only in the West, where pills are "natural". I think there is a way out of Sarcoidosis with acupuncture and I will keep on doing it untill I am well. Combined with exercise, no stress, no alcohol and cigarettes healthy food and faith, it will be my rescue.
July 29, 1997 - S. Ledbetter I'm writing this to see if anyone who has sarcoid can give me more information. I have sarcoid and my disease is getting worse instead of better. It's now to the point where I can hardly eat or drink anything. I was wondering if there are any other options to use besides steriods? If anyone can help me out on this, it would be greatly appreciated. I have had the disease since I was 16 years old and I'm 28 now. Any time you seem to ask questions about the disease nobody seems to have any answers, so I got on the internet for this reason hoping to find others out there like me. I think this is where I might get some of the answers that I need. Thank you once again.
July 26, 1997 - A. K. King Hello friends, I have just completed a full physical exam at the #1 hospital here in Detroit. The good news is the Sarcoid is only in my lungs. That's considered rare according to the specialists. The bad news is my lung capacity is 70% and some scarring is present. Every doctor I spoke to told me that Cortosteroid treatment would not cure me of this. Every doctor I spoke to guaranteed me that I would experience numerous side effects from the Cortosteroid treatment. Will one of the writers to this site tell me why you feel it is possibly beneficial to take Prednisone or any steroid? In my humble opinion, I am positive that the sarcoidosis would have spread throughout my body if I were not a macrobiotic eating, positive thinking person. I will continue with my efforts to heal myself thru natural methods. For those of you who scoff at what I'm doing read my previous messages to this site. I was not always directed and disciplined. That's how this condition became so entrenched in me. There are people in the world who have knowledge of healing methods medical doctors choose not to use for monetary reasons. The knowledge of Holistic medicine plus the power of the God force which created the Universe can heal anything. Don't think me a flake or a goofball. It just seems illogical to me to ingest or do anything that will not cure me, give me illnesses I don't currently have, and turn me into an eating machine. If you drop me an E-mail message, notice my address has changed. I love and support you all.
July 11, 1997 - P. Cox Hi! I have had sarcoidosis for at least 10 years. I too was on Prednisone and suffered all the side effects from the drug, I hated it and it really didn't put my disease in remission. I would like to comment about the letter Vicki G. wrote about methotrexate because that was me that she was talking about. I noticed that there was a comment about methotrexate from the editor and I would like to comment back. Yes, I agree that all drugs can have side effects even natural herbs it used improperly and even properly at times. I have been on Methotrexate for about 5 years now at 2.5 mg 3 times a week. My hematologist monitors my liver enzymes about once a year and they have remained normal. I have had no adverse effects with this drug at all and a ton with Prednisone. This drug controls my disease process very well. I have not had to increase the drug during this entire 5 year period. So I would encourage others who have sarcoid to discuss it with their physician as it may be an alternative drug therapy that may work for you. It's great to see all the new letters, I've been gone from the site for a while and was pleased to see that others are visiting here. It really does help to know there are others that understand how you feel. I would like to visit with anyone who would like to email me.
July 9, 1997 - C. Alvarez I have sarcoid of the lungs and have had it for about 8 years. I am interested in alternative medicines. Also I would be curious to know more about this condition and how it worsens or gets better.