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December 13, 2001 - Jackie I was diagnosed with Sarcoidosis 2 years ago. I wonder if any of you have problems with being cold but sweating when the sarcoid is flared up? Also if any of you know of a treatment besides prednisone? Every time we try to get my prednisone down to a minimum it flares up.
November 30, 2001 - Freda I was diagonised with sarcoidosis in 1995. I stayed out of work for about five weeks taking steroids. I gained about 25 pounds moving from a size 5 to size 10; it made me very depressed. I have lymph nodes in my eyes on my face and in my nose; they get very large at times. Again, in 1999 it flared up. I started back on 60mg of steroids. Lately, I have been having joint pains all over my body.
November 25, 2001 - Anonymous Hi. I was diagnosed with Sarcodosis, October of this year. I really appreciate reading everyone's comments. I'm so glad I'm not alone with this monster of a disease. However, I'm thankful, that I do not have cancer. My story began when I was having severe back pain in September of this year. The ER doctor ordered X-rays and CT-scan which revealed I had masses on my right and left lungs, also enlarged lymph nodes. I was referred to a Pulmonologist who suspected Sarcodosis. I had a biopsy of my lymph nodes, which confirmed this disease. I was given 40mg of Prednisone, which has made me gain 15 lbs in 1 month. I had the Prednisone reduced to 30mg. I am now trying to ween myself off of this medication. After hearing all of the side effects, I think that this drug is doing more harm than good. I went and bought some over-the-counter water pills (Aqua-Ban) to try and get some of this water weight off. I will wait to see what happens. I wish everyone luck in trying to find a cure for this disease, because I think that we know more than the physicians. Peace
November 23, 2001 - Tanya My mother was diagnosed with Sarcardosis in 1997. She has never gone back to the doctor for a check up. Recently she has been coughing and she is suffering from the same ailments she had when she was first diagnosed. Could someone please send me infomation on this disease? I would really appreciate it.
November 08, 2001 - Leda I am a 48 yr old female with an undiagnosed auto-immune condition. Most recently a MRI of the chest revealed signaling in the brachial plexus area and lymph nodes. Three months ago I experienced a sudden onset of severe chest wall pain with growing numbing and weakness in the left arm. A neurologist performed an EMG which showed irritation. The MRI results are puzzling to me, particularly because I just had a lesion (with necrosis) removed this past July. What does the MRI suggest?
November 06, 2001 - Robin Great site! I'm 37, Afro-American, female and was diagnosed with Sarc about 3 yrs ago through surgical lung biopsy. After the surgery the doctor immediately knew I had Sarcs. He told me my lungs were covered with a mass, FREAKED ME OUT! It started with a bronchial cough six months prior. The cough continued to worsen and I was feeling weak/tired, heavy in the chest, and chilled (similar to Denise). After the tremendous weight loss (size 13 to 10-the only GOOD thing about this!), I went to the doc and was treated, tested and x-rayed to find out I had pneumonia and scarring on my lungs. That's when the biopsy was done. The doc prescribed the pregs stuff (steroids) only if difficulty in breathing, which I wasn't (wouldn't have anyway. He did give me an inhaler-made me light-headed). The coughing died down but the tiredness increased and the body aches began extremely. To date my sarc is still alive. It flares up twice a year (August and Jan/Mar). The aching continues and has increased and spread to several areas in my body. I primarily thank "Barleygreen and Noni Juice" (don't know if I can say that here) for keeping the disease manageable. Also plenty of water and rest. I would like to know how can I combat the aching joints, wrist, ankles, elbows, shoulders, and lower back? Does therapy work? Will insurance cover this? And lastly, are there anymore sites like this?
October 24, 2001 - Anonymous I too have had sarcordis in my left eye as well as my right. I was completely blind in my right eye and could see only limited in my left eye. I to went to the doctor and he put me on prednisone for one week and I told him that he couldn't put me on a high dosages and take me off by the end of the week. Needless to save I ended up in the emergency room in lots of pain because of that. But I had a doctor who knew what he was doing, and those kind of doctors are priceless. It has now been 18 years and so far by the grace of god I am doing fine.
October 20, 2001 - Evan I am 42 year old Australian male of European descent. I was first diagnosed with Sarcoidosis in 1992 (aged 32), with symptoms of fatigue, night sweats, decreased weight and appetite, after Tuberculosis and Leukaemia were ruled out. My doctor had my lungs X-rayed, which showed enlarged hylar lymph glands in the lungs. Initially, the disease went into remission of its own accord, but returned again in March 1995. This time I was treated with 25mg per day prenisolone, which gradually was reduced over some months. By 1996, I was diagnosed as being in remission again. The disease re-appeared in late 1998, this time with asthma symptoms, apparently influenced by fibrosis of the lungs which was this time apparent in my X-ray. (Incidentally, I had a quadruple heart bypass in April, 1997). I was treated with gradually reducing doses of prednisolone until the asthma symptoms disappeared (also influenced by changing my anti-depressant from Zoloft to Endep). In April, 2001 my specialist picked up high calcium excretion levels and I resumed 25 mg prednisolone daily. This reduced gradually to 2 mg per day, which I've been on for 4 months now. The latest development has been in the last month, in which I've had low blood platelets. Normal levels are 150,000 to 450,00 cells per volume. Mine was down to 75,000 a month ago, and then 61,000 2 weeks ago. I've just had a CT scan which showed the spleen was only slightly enlarged, apparently ruling out sarcoidosis of the spleen as a cause. I'm still waiting for the results of my bone marrow biopsy on 17 October, 2001. People have noticed a purplish area on my cheek, which I've had for at least 2 or 3 years I guess. Reading some of the literature, this also seems to be a skin symptom of Sarcoidosis. I've been experiencing fatigue again lately, which is the symptom of the disease I detest the most. From the above, you will see that the disease re-appears every 3 years, for whatever reason. I have a first cousin (on my father's side), who's also been diagnosed with Sarcoidosis and suffers from fatigue.
October 17, 2001 - Stephanie It's been four and half years ago when I was first diganosed with sarcoidosis. The doctor took a test of my lungs, and that's when they discovered it. I get short of breath, have wheezing, catch a cold whenever the wheather changes. I was on steriods, it made me gain so much weight, then they took me off, of it then, I catch what ever is around me bcause my immune system stays low. The docs do not know what's going on with me. I had seven major surgeries, and at this point they still cannot give me an honest diagnosis. But my chest hurts when I breathe in and out, that the pain goes down my arm and my back. The docs, keep telling me to lose weight, which I think is a cop out. My hospital bills are out of this world, I don't qualify for straight medicaid, so therefore I'm stuck with bills that I can not pay. I lost my hair and they do not know the cause of that so they say.
October 15, 2001 - Trisha I know someone with sarcoidosis. How does this disease affect the eyes and what types of treatments are used?
October 12, 2001 - Rita Hi, Is there anybody who can help me understand and confirm the possibilty I may have sarcoidosis? My gallium scan is 3 time postive, and now the increased activity is all the way from my spleen, liver, lung, to my eye. The doctor said somthing about my eye glands, I didn't know about any eye glands, but my vison is blurry, and sometimes I can't see and have to pull the car over because it gets so blurry. I almost collapse with pain in both my legs that comes on suddenly at different times, mainly when I'm stressing, from moving stuff, or over doing it. I'm always short of breath; my heart is enlarged and I have congestive heart failure, but no doctor knows why. If it is in my eye glands, how do you get tissue from your brain to confirm it, or do MRI's tell you for sure? How did the rest of you find a doctor who knew sarcoidosis and how did you get your final diagnosis?
October 12, 2001 - Nancy I have been on Methotrexate for about 6 months. My Doctor works at Group Health in Bellevue, Washington and has sarcoid himself. We have both experienced success on this medication. It does require frequent blood tests to check for side effects.
October 03, 2001 - Lisa Hi, I just found your web-site and it has been amazing. My Dad has been sick for a couple of months - weakness, aching, night sweating, coughing, inability to keep food down, lumps on his legs etc. Doctors were unable to diagnose him. Today we found out that it is sarciodosis, but we still don't know much about it. According to the doctor there's not much we can do for him, with steroids preventing further damage to the lungs, but not actually treating him. This news has hit my Dad badly, and now he's getting very depressed that he will not be able to return to work. If anyone can give me more info, or let me know of their experiences I would really appreciate it. Thanks.
October 01, 2001 - Carol When I was 35, in 1965 I was diagnosed by lung biopsy after a time of exhaustion and burning down my back and having flu symptoms. Treated with 60 mg. prednisone for one year. My children were ages, 5, 6, 8, 9, 11 at the time. Doctors told me I could live a normal life, maybe symptoms would disappear. Fortunately I was an at-home mother and could rest some while kids were in school and grandparents happy to help out. I had trauma as a child and at 7 pneumonia and chronic bronchitis. This weakness continued into adulthood. Now, with the sarcoidosis, colds were especially severe. But in-between times felt good and healthy. I was divorced at 42 years, kids now all teens. Stress caused asthma and allegeries, along with colds with severe coughing with pink fleshy lumps apprearing in sputum. Pulmonologists treated asthma with inhalents. Colds with antibiotics and theodure, predneson, etc. I did yoga, fosamax, estrogen because of resulting osteoporisis. Moved from Connecticut to Florida in 1990. That year in CT, I had been hospitalized twice for pneumonia. No pneumonia since. But now 2001, had swollen stomach, flare up of sarc. in spleen and liver. Now taking 15mg pred. need help as soon as I can get. Changed HMO back to medicare effective Nov. 1. This web site is so helpful. I plan to check out specialists in Mayo Clinic in Gainsville. Best wishes and prayers to all, Carol