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December 29, 2002 - Rice I was diagnosed with sarcoid back in 1992. During this time my lungs were affected. It took a very long time for it to get better. I was so depressed with the weight gain and stomach problems from the prednisone. I seemed to be okay as long as I wasn't stressed. A year ago, I was feeling tired, craved for water, stomach pains, etc. I went to see my Internist and was told that I was experiencing Renal failure. She re-did the test because I had no prior history with kidney problems. I saw a nephrologist and was told to go back to get my last couple of blood test. I got all of my medical history since 1992. Lo and behold , I had sarcoid in my kidneys as far back as 1992. Needless to say, a biopsy was done on my kidneys, I have lost over 60% usage of both kidneys, which is irreversible. It is very rare that sarcoid attacks the kidneys. I have just ended a year of large doses of prednisone, and my levels are as stable as they are ever going to be. I am now having a lot of pain in my joints especially in the hip area. I beleive that this is due to the long term use of prednisone.
December 29, 2002 - Roseann I was told I had Sarcordosis in 1983 at the age of 26. For a while I too was on Predisone. When I get a cold I have to see my Doctor and get something for it. I still get my chest x-ray yearly and an ACE test done every 2 years. But my Sarcordosis seems to have settled in my eyes I now suffer from cronic eyerittises. I have to put pre forta and octufin in my eyes every day. The pre forta being a steroid caused cataracts in both eyes I have had to have the secondary cataracts in both eyes, last year the membraine that holds the lens in my eye fell inside my eye, it was removed and now I have to wear a contact to see with my right eye. On Jan 21 I will be having surgery to remove the other membraine and lens before that is falling. All of this because of the eyeritises and pre forta put in my eyes. I look at it this way I am alive and I still can see. I have this disease but this disease dosen't have me.
December 22, 2002 - Sonja I'm a 34 year old black women, who was diagnosed with Sarcordosis. My doctor put me on 30mg of prednisone a day for six 6 months. I went from a size 4 to a size 14. It helped me breathe again, but I had all this weight gain. That did nothing but make me depressed. So I weaned myself off of it. One day I went to visit another doctor, in a totally different medical field, and I told him what I was taking and why I was taking it. I was told to take alka seltzer. Every night I would take the alka seltzer and sleep with the air conditioner on, it helped tremendously. My breathing problems started around October 1997 and I was fine after or around October 1998, and I have not taken anything since then. I apologize if any of my spelling is incorrect, but this is what I have experienced.
December 18, 2002 - Tabatha Don't stay on prednisone. They had my mom on it so long and it messed her up. If Im not mistaken it gave her premature cataracts.
December 08, 2002 - Patricia I was just checking if they had any new information on sarcoid and stumbled on this site. I'm 43 and I was diagnosed with Sarcordosis in 1996. I'm in the military. In 1996 shortly after moving to Ft. Lewis WA, I was experiencing shortness of breath. I could not understand why I could not walk a short distance before I would start panting like I just ran 8 miles. I went to the doctor and they hooked me up to an EKG and noticed there was nothing wrong with my heart, so they sent me to a Pulmonary clinic and decided I had Asthma. Later I developed a cough that would not go away. I thought it was strange because I would not cough up any mucous and my chest would hurt so bad. I noticed this cough would not go away and I was coughing up blood so I went back to the doctor. They decided to run a test for Tuberculosis, but the test came back negative. I was told that they had to do a Biopsy. After the Biopsy I was diagnosed with Sarcoid; I was put on 40mg of Predisone and have monthly breathlizer. I found that I was gaining weight from the Predisone and asked my doctor to reduce my prescription. I stayed on Predisone for one year. When I got stationed in Korea my new doctor didn't see any reason why I should be on Predisone for that long. She decided to ween me off, but I still had my monthly breathaliser test. My condition did not worsen from less of the medication. I stayed in Korea for one year and when I left there I was completely off of Predisone and only had to check my breathing yearly. I'm blessed, because I was told that my Sarcoid went into remission. I felt that I had to share my story to show that sometimes this disease really goes into remission and there is hope. God bless you all.
December 03, 2002 - Granny Pat I just stumbled unto this site. After reading a while I thought I would just add that I have this also. The medical field cannot agree about anything, cause, symptoms, areas affected etc. About 10 years ago my arthritis was so bad I could do almost nothing and was totally exausted just moving to the bathroom etc. After going to several doctors and even being told by them that because my liver enzymes were so high that I had to be lying about not being a drunk, finally I went to Mayo Clinic. But I still was not diagnosed. Seven weeks later I was in an emergency room for labored breathing. I was mis-diagnosed with lung cancer. The doctor was 99% sure. Then back to Mayo. That's when we found I had sarcoidosis. Some doctors say it runs in families, others say no way. However many of my family, all dead now, had chronic respiratory problems, and arthritis. I am doing fair now except I think it is attacking my feet and ankles. God bless you all.
November 29, 2002 - R. Diehl I was diagnosed with sarcoid 8,19,99. I have bad leg, hip, back, and left foot pain. Is it because of predesone or sarcord?
November 15, 2002 - Erica November 9th, 2002 I lost my father to this disease. I am writing this to let people know that despite my Dad's good efforts of taking his medicine and oxygen therapy, this disease took him away from me and he was only 54. Therefore, for all the people that are suffering from this disease, please take it easy and take care of yourself.
November 13, 2002 - Marilyn The doctors think that I have sarcoidosis only in my bones. After I tore my rotator cuff, the MRIs showed what was thought to be Multiple Myeloma or Lymphoma. After 11 months, many tests, and 3 biopsies, results show non-caseating granulomatous inflamation. Cultures are negative for fungi, etc. The lesions are in my thoracic and lumbar spine, shoulder and leg. In 3 months MRI's show that the lesions have increased in number and size. Has anyone else had these symptoms?
November 06, 2002 - Mandey I have just been diagnosed with sarcoidosis after lots of testing and biopsies. I don't really know what to expect and the doctors here don't seem to either as I am their first case. If anyone has any info, I would love to hear from a REAL person who has this disease.
November 06, 2002 - Arlene I have a son who has had sarcoidosis for 14 years. He has tried every kind of treatment the doctors could think of. He cannot take the predisone as it causes him problems. His liver and spleen are both involved. He is now having muscle pain which is really bad. The doctors cannot find the cause of this. His muscles are very tight and they won't release. When he walks they get even more tight and the pain is unbearable. He is in pain all the time. I was wondering if any of you have this problem and what your doctor has done for you. The doctor took a muscle biopsy but so far he has not come up with anything. If you would post your anwser on this site I will keep checking back. Leave it for Arlene
October 28, 2002 - LaRhonda I was diagnosed with sarcoid of the lungs in May 2002. I was at work at Wal-mart when it felt like a crane had hit me in my chest and I couldn't catch my breath. I was rushed to the emergency room. It was suggested that I had pneumonia. After no relief occured, I was given an X-ray. The X-ray showed that my left lung had collapsed. I was rushed to MCG and my stay there was 33 days. I was out of work for the next 6 months. Now I am back at work running behind a bunch of third graders (could you imagine). The shortness of breath is the worst! I hate it. Now I have to have my eyes checked for sarcoid. Sometimes I feel that I am fighting a losing battle. But I know that I'm never alone beacuse the Lord is always by my side. He is by my side now and he was for my long hospital stay. I also forgot to mention that I went through 7 chest tubes during my stay. In June 2002 I was given the choice to start on predisone. Boy what a big mistake. I gained 15 lbs. in one month. I looked miserable and felt miserable. I took predisone for 2 months and I decided just to turn it over to the Lord. My face looked as though it was about to explode. I return to work in Aug. 2002. Boy was was that really a task. The shortness of breath is the worst for me. I hate it. But I take one day at a time. I thank the Lord for wonderful family and friends. I also thank God for my boyfriend (Hicks) and my best friend (Sherri). They really went beyond their duty and stuck by my side (even through my awful mood swings!!) All I can say is prayer is the answer. I try and stay postive everyday but sometimes it's a hard task. We with sarcoid need to stay postive. No weapon formed against me shall prosper!
October 25, 2002 - Celeste I am a 39 year old African-American/Hispanic female and I was diagnosed with Sarcoidosis about 5 years ago. It started with me noticing a couple of lumps on my arm and upper back. They weren't visibly noticeable but if you touched me you could feel them. I went to a dermatologist and he had a biopsy performed and that's when I was diagnosed. I have taken predisone twice, it will dissolve the lumps but after a few weeks they would come back and seem to grow and then more appear. I have two very noticeable lumps on my face, another red one on the opposite side of my face and one on my hair line on the side of my face. I have so many lumps up and down my arms and legs and my breast are filled with them. I have a pulmonary test done every year and so far it keeps coming back normal. I am beginning to experience more shortness of breath and I am really getting scared now but all my doctors tell me that treatment is usually worst, that it will go away on its on. I am also now experiencing some joint pains in the elbow and behind my heel, don't know if it is associated with it or not. Don't know much about nothing. I have had nose surgery where they went in a removed some lumps hoping to help me breath through my nose, I have yet been able to breath through my nose in over 2 years. God help me if anything ever happens to my mouth I only breath through my mouth now. Everywhere I have a lump my skin is lighter and very ashy, dry looking. Someone please give me some type of hope that I will get some type of relief. Someone told me that vitamin E is a vitamin that helps dissolve the lumps, apparently from the other comments I have read this is not true. Can someone please help me, I am complete lost and scared. I want to have a child and I am afraid because of the disease; should I be afraid? Someone please let me know something.
October 10, 2002 - Bill I was diagnosed with sarcoid seven years ago, however I never did fit the normal profile of a sarcoid patient i.e too old etc. I have recently learned that in the late 1960's I was a guiena pig in a DOD project called Project Shad. The fleet was sprayed with 15 biological and chemical elements without the knowledge of the service men involved. I do not want to go into detail as to how it was done however it involved many thousands of sailors and Marines. The agents used are as follows: bacillus subtilis var. niger (bacillus globigil), Betapropiolactine (B-propiolactone), Bis(2 ethyl-hexyl) hydrogen phospite, Calcoflour (flourescent brightner 28, calcoflour white st), Coxiella burnetii, Diethylpthlate (synomyms: diethyl ester 2, benzenedicarboxylic acid), Eschericia coli (synonym e. coli), Pasteurella tularensis, Phoshorous 32, Sarin nerve agent, Serratia marcesens, Staphylococcal Enterotoxin type b (pg2), Sulfur dioxide, Uranine dye (sodium flourescein), and Vx nerve agent. I was already level four chronic sarcoid when it was diagnosed, after six months of study. I was told sarcoid is the file 13 disease sometimes. The disease of inclusion.
October 09, 2002 - Susan I sit here with a lump in my throat as I pray for my 47 year old friend who lay in the hospital. We have been friends for over 20 years. I told her, after she complained of severe fatique, constant nagging cough - that she needed to go to the doctor because I feared she had Lupus or Sarcoidosis. I explained to her what "little" I knew about Sarcoidosis, but felt she had symptoms. For the last 8 years I have watched my friend's health fail. She used to visit me in my old apartment and could not come in because I had 14 stairs and one would take her down. She had several oxygen tanks at home and some days she never made it to work. She would not tell anyone she felt bad, but kept on going. Now she may not make it thru the night. Does anyone know of support groups in North Carolina or of any current studies? God Bless You All.
October 08, 2002 - Jeana My 15 year old neice has been diagnosed with "possible" sarcoidosis. They say "possible" because they aren't really sure what she has but after reading up on sarcoidosis, I think we may have found it! Two and 1/2 years ago we had our first big episode and spent 31 days in the hospital with her brain swelling (4 lumbar punctures in 3 days), weird rashes that came and went, fevers as high as 105.5, and boy did her personality change! If she could have spun her head around she would have! Almost all of her labwork was normal, except her sed rate, they tested her for every disease known with no luck. After high doses of IV steroids it resolved itself out of the blue one day. Unfortunately she had to go home on those same high doses of steroids and be tapered off. It took her a year to lose the weight and feel like a "normal" pre-teen. She had to deal with the moon-face and buffalo hump that comes with the steroid use. Then in April, 2002, her fevers came back with a vengence, they kept telling us it was the flu, finally they admitted her on a Thursday, her fevers went away by Saturday but her chest CT showed lesions on her lungs, before they could bipopsy the lesions, a "blister" formed on her brain, making it swell and cutting off the out valve from the brain to the spinal cord. She became unresponsive and we had to make the decision to put a ventricular drain in her head to let off the fluid. She had that 8 days and with massive steroid doses once again the symptoms went away and the lesions on her lungs disappeared. Now, Oct. 2002, we are once again in one of the greatest hospitals in the country, once again with fevers, rashes, fatigue, dizzy spells, and now the tell us the lesions are back and they want to biopsy. I am a nurse so these things alone do not bother me, the fact that they are happening to a neice I help raise does. I decided to look into info and found this web site.... it has been great to know there are others out there with these same problems.... if anyone has suggestions or things that have helped them deal with this disease, please let me know. My neice is now 15 1/2, she is a beautiful girl inside and out, she is losing her lovely once thick hair, we think from the continued steroid use but aren't sure. Thanks and God Bless.
October 05, 2002 - Brittany Someone please give me more info on this disease. I had a sweet, young beautiful cousin who died from this disease. I would like to know if this disease can run through the family and also how do you get it?