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March 22, 2002 - Laura I am trying to find out more about sarcoidosis and the effectiveness of steriod treatments in its short and long term effectiveness. Thus I was wondering if anyone using this site has any additional information they feel may be useful to my studies. Please could you put a posting with the relevent atricle or web-site names etc. Many thanks
March 20, 2002 - Carl I was diagnosed with sarcoid around 1987 during a visit about shortness of breath. Since that time I have not had any major flare ups of sarcoid. However, I have had numerous bouts of bronchial attacks. On each occassion I was prescribed an antibiotic. After several occurances my wife suggested, in combating cold symptoms, that I begin to take vitamin C (this is no suggestion to others, but I take 1500 to 2000 mg each day). Since taking vitamin C I have not had an incident of bronchial irritation in about 4 years. There is no known cure for sarcoidosis, yet a daily regiment of vitamin C, good diet, and exercise seems to strengthen my sense of combating all associated ailments of this disease. I believe that it helps build up the immune system, particulary during the months of Aug, Jan and Mar when the weather begins to change drastically. I still suffer with chronic type pain symptoms in my back and joints, but I believe I must accept that some conditions will persist. As a newspaper carrier, I am constantly in perpetual motion. I believe this has also helped my condition where exercise is concerned. Furthermore, a positive attitude about any situation that affects me physically and emotionally is an added plus. I hope that sharing this information will help someone. Thank you
March 14, 2002 - Janice I am 36 years old and I was diagnosed back in August of 1997. I was coughing up blood and feeling very weak so my husband took me to the emergency room and the doctors there recommended doing a CT scan w/dye injection to see what is the cause of this bleeding. After the results were in that I had many signs of lymphnodes that didn't look good and the only way to find out what is wrong is to have a biopsy done and luckily that said it was benign and that the sarcoid was not active at this time so I don't need any medications. But of course I have many problems with pain, tiredness, shortness of breath. All to which is the same concern for most. Where do we go for the right help and what do we do. We don't really look sick but I sure do feel it everyday.
March 9, 2002 - Leah In my last post March 9,2002, I failed to mention some of the things I did that I feel have helped me. In 1983, I removed all meat poultry, and fish from my diet and limited cheese and eggs, and stopped smoking. Prolonged periods of stress seem to preceed onsets of symptoms. In 1991, I rededicated my life to God and faith in my Lord and Savior Jesus Christ has, I believe kept me. My periods of flare-up have been relatively short lived and limited, as far as organ involvement. In the throws of a flare-up now, I think. Had ER doctor diagnose pleursy in left lung, on March 10,2002. Will see pulmonary specialist on Monday. Reading the posts have helped me tremendously. No one who has not experienced sarcoid really understands how bad it really feels when its active. Thanks for the ear.
March 9, 2002 - Leah I knew there were others who shared Sarcoid, but I had only met two and their stories were so different from mine. I was diagnosed with sarcoid in 1977 by a scalene node biopsy. My symptoms at the time came on very suddenly, swollen joints, pain in the chest like an elephant's foot was on it, and blood clots in the right leg beneath the knee. I had just had my second child about six months before all this and did it change my life! I was in the hospital for two weeks at a time for Heparin IV, and breathing treatments, for about two years. My marriage went to pot. I think my husband was afraid I'd die on him any moment, I had no strength to be a wife or to really enjoy caring for my daughter and my nine year old son, and I went from a size 10 to a size 16, 18. I was really sickly, and was once rushed to the hospital from my classroom of 2nd graders, when I had another "elephant" attack. I was placed on prednisone and INH and B6. I went into remission for about 5 years, then had another episode while driving my daughter and a friend somewhere. Well, I was admitted to the hospital and treated for a pulmonary embolism. I stopped the prednisone myself after about 2 -1/2 years when first diagnosed and just took anti-inflamatory meds. Whenever I had a really bad onset I would go back to the prednisone for a short time. I had been in remission for over 10 years when 2 years ago I just started explosively vomiting. After an endoscopy, there was found a lesion in my stomach. I've been on prilosec and then down to 400mg of tagamet twice a day, Last endoscopy, last year showed no signs of the lesion. I'm sitting here chest and back hurting like I have pleuresy, it came on very suddenly over 24hr period. I've been using Vicks in my steam vaporizor and a moist heat pad on my back. I'm praying that it will pass. I've been very stressed on my job, lots of changes, but have been lap swimming after work to deal with it. Until I stumbled on this site, sarcoid was the farthest thing from my mind. I sure hope it's not another onset. Lungs and stomach have been the only organs affected by lesions so far. God Bless you all. I will pray for us all.
February 27, 2002 - Roberta I am 41 years old and they decided I had sarcoid in 1997. I was sick for a long time before that. I just come out of a 16 month remission. This time, sarcoid has added my kidneys and under my eyelids I have granulomas. I now have it in several organs. I was very mislead about sarcoid. They treated me like I had a cold in 1997. I'm happy to see things are being taken more seriously these days and I'm thankful for all the info you have to offer. I live in Indiana and I'm ready to start a support group in my area.
February 22, 2002 - Cinde I was diagnosed with sarciodosis twelve years ago. I had a lesion on my leg at that time that has never gone away. This week I was told that the lesion is now skin cancer. Is there any link between sarciodosis and the lession turning into skin cancer?
February 19, 2002 - Fannye Thanks for your website it is informative as well as supportive. I recently found out that I have sarcoidosis, although my doc knew about it when he told me about my primary pulmonary hypertension. I am now on medication for my PPI but have started to take steroids for the "asthma" that keeps coming back every time I get off of the prednisone. The Flolan does work and if anyone is constantly short of breath, then maybe you should see a primary hypertension specialist or PHAassocation.org for more info. The meds really have helped me and I am taking prednisone when needed.
February 19, 2002 - Fannye There is another disease that is associated with Sarcoids and it's pulmonary hypertension which is what I have. As Kimberly described herself, that was me before I got on FLolan. I would like to tell her about the pulmonary hypertension webpage PHASSOCIATION.ORG and maybe she should ask her doctor or another specialist about pulmonary hypertension as many doctors don't yet know about pulmonary hypertension. Before the pill came out recently, there were only calcium channel blockers and a catheter that had to be inserted into your chest and you had to make medicine and wear it all day long, so things are getting better. I just learned that my pulmonary hypertension comes from my scardoid, so there may be help for others out there who have sarcoids and can't do anything else about it. Please pass this on to Kimberly and whoever needs this info. If needbe, she can email me. Thanks for your site. It is most informative and supportive. Thank God for you.
February 17, 2002 - Candice My father was also recently told he had sarcoidosis after years of being told he had aspestosis. I am realy looking for information on on sarcoidosis and it's different treatments.
February 12, 2002 - Dorothy In 1971 I was diagnosed with sarcoidosis. My knees hurt so much my whole world seemed to consist of trying to stop the pain. I didn't connect it with sarcoid until much later. That isn't why I was diagnosed with Sarcoid. The glands in my neck started to swell, first there was just one swollen and then two and then it seemed the whole of my neck consisted of lumps. I went to my doctor. At first he seemed to be baffled; eventually he sent me to hospital for a biopsy (I learnt later that he thought that I had Hodgkins Lymphoma). Ultimately I was diagnosed with Sarcoidosis. I think I must have been very lucky. I didn't have any treatment. I was told to go home and forget about it, and that's what I did. And that's where I think the luck came in. The symptons just disappeared. I don't know when, I just know that one day a few years later I was suddenly aware that I no longer had any swellings in my neck, and so far about 25 years later it hasn't returned. I think my lungs are a bit dodgy but nothing I can't deal with (fingers crossed). The hospital kept a check on me for about 4 or 5 years, I can't remember the exact length of time. Eventually they discharged me. I would like to say to anyone suffering with sarcoidosis please don't despair, you never know you might be one of the lucky ones.
February 06, 2002 - Marci My name is Marci Lee and I was just told that I probably have sarcoidosis in my liver. They found multiple lesions of varying sizes and they HURT. It's not a disabling pain usually, but it's enough to be quite annoying. I started taking vitamins about 6 months before the symptoms developed and I'm wondering if they might have had something to do with causing the sarcoidosis, since the disease involves the immune system. Since taking my vitamins, I have not been sick nearly as much as I used to be and colds last about 1/4 as long as they used to. However, if they are causing this it isn't worth it. I take Women's One A Day and 200 mg of vitamin E/day. Let me know what you think.
February 06, 2002 - Shelli My sister has just been diagnosed with sarcoidosis and we want to know what types of alternative therapies are out there. I use magnetic and far infared therapy on many other malities very succesfully. My family is medication and physician free other than physical examinations and the ocassional visit to the chiropractor. I have read about the study the Russians did with MW therapy. What about highly technical magnetic products?
February 03, 2002 - RJ Forbes I have had CNS SARCOID for over twenty years. This all began with dizzy lightheadedness, ringing in the ears, mental confusion. I had lung involvement that was biopsy to verify sarcoidosis. Today’s sarcoid patients are very fortunate to have MRI-CT-SCANS that was not available or reliable in the early 80's. All diagnostic equipment is not equal. Small lesions back then would not show up on the early CT scanners. MRI was just being developed. I was one of the first volunteer testers for MRI. My advice for all would be go to the Mayo Clinic in Rochester MN. My second choice would be Shands Teaching Hospital in Gainesville FL University of Florida. Back then 90% of the local doctor’s thought I was crazy and a head case. I remember how relieved I was when a sarcoid brain lesion was found at the Mayo Clinc. I had a team of eight young neurologists at Shands recommend a different treatment than anybody on this sarcoid board has mentioned. The main problem was to break the brain barrier right and left sides. I had three threatments of Medrol administered intravenously. They took before and after CT SCANS and after the IV MEDROL treatments the sarcoid lesions were reduced to scar tissue. I remember spending two weekends as an inpatient at Shands and another at my local hospital. The specialist recommended switching to 16mg of Medrol every other day. Medrol was preferred over prednizone because it metabolizes faster. Today my main problem with sarcoid involves both large toes. I was finally taken off of steroids. On the disability issue if you are not receiving it or you were not approved for SS your physician was to blame. Find another doctor.
January 30, 2002 - Paudie Please send me some or loads of info on sarcoidosis in the lungs. My dad has it and I need to find more information on it. Thank you.
January 27, 2002 - Estelle I am a 31 year old white female from Canada. I have sarcadosis. It started like sore hives. Then bruises from knees down. I looked like I was beaten with a bat. DRY cough, sore joints, and swelling. It started Jan 1/02. I just had a biopsy on my lymph nodes between my lungs. The doctor had to rule out hodgkins lymphoma. The symptoms are very similar. It is Jan 26/02 and I feel better. The brusies, swelling, and sore joints are better. I cough flem and still get slight sweats at night. The fevers and cold chills have stopped. It seems to have run its own course of about 3 weeks. I am starting treatment anyway to make sure. I am taking prednisone. 40mg for 4days, 30mg 4days, 20mg 4days , 10mg 4days. Then I will be done and it will be Jan 9/02. I was completely healthy last month. It happened so fast. I still dont understand it. I hope this helps someone else to understand a bit.
January 24, 2002 - Patricia I was diagnosed with sarcordosis in 1990. Like many of you I had difficulty in breathing, swollen lumps on my legs and major sinus problems. I have been on predinzone for nearly 12 years. I've had sinus surgery twice and the lumps removed from my left ankle. Whenever the predizone is reduced I find myself back to the same problem. Shortness of breath and problems breathing. I was taken off of predizone for 6 months, I developed a blood clot in my side, lost 45 pounds and was hospitalized. I am back on the predizone along with blood thinners. The doctor cannot say for sure if the blood clots came from the sarcordosis or not. I found out just yesterday that a friend of mind died. She had sarcordosis in her lungs and liver. Although I feel much better the news of her death really scared me. Is the death rate high for persons with sarcardosis?
January 11, 2002 - Vicki I am a 31-year old white female of Scotch/Irish decent - Diagnosed with sarcoidosis of the lungs and lymph nodes back in May of 1998, but I had been told since the age of 19 that the same symptoms were pleuresy. I have flareups of SEVERE chest pain and difficulty breathing every few months or so. My left arm also goes numb when my left side is affected. Thankfully, I am under no daily steroid treatment. I just take anti-inflammatory drugs (Naprosyn) and pain medication (Ultram) when symptoms flare up. I really hope a cure can be found. It's so frustrating to lay there and hurt like nobody's business and to know that there's really nothing that can stop it for good! Good luck to all of you!
January 07, 2002 - Bill I have been diagosed with sarcoidosis in July of 2001. I am on predisome and I inintially improved. Presently I am at a standstill. I am looking for a Doctor that is an expert in sarcoid in the St. Louis area. Please reply with a name and phone number.
January 06, 2002 - Abaro I was just reading your articles regarding the sarcoid in your eyes. I am an African-American female who was diagnosed some time in the early 90's (91-93). I have Sjorgren's Disease as well as sarcoid. It has invaded my lungs and around my heart. I have granulomas all over both my upper arms with a few on my lower arms, now on my back (upper center) and now moving down my buttocks and my left hip, thigh and leg. I know this will soon occur on the right side because they seem to appear in the same spots on both sides of my body like a mirror. These are raised sometimes darken circular looking bumps, the dermatoligst performed a biopsy and confirmed it is truly sarcoid in 1999. People often think they are mosquito bites. In 1999 I had symtoms which I thought was the flu but I was having my first attact of sinusitus. I was given an antiboiotic to clear it up and it seemed to for a moment. Then I had it again. Now I'm told I have allergies. My nasal passage stays clogged up with mucus that is always somewhere between the color of your grass and mint green. So I was given Beconase and a saline solution (2 puffs in each nostril daily). I have noticed around Thanksgiving 2000 I don't really taste my food I'm eating as much as before. At one time my lungs were inflamed and I too was placed on Prednisone for about 4 to 6 months. I blew up like a balloon. I thought my legs were going to pop if I hit them. I bruised easily, was tired and still short of breath. I must have been living in another world because I have continued to suspect some of my problems are simply because I was overweight. Maybe, I have been in denial. But no longer. For the past about 4 months my lower back hurts on almost a daily basis, I hear a crunching sound when I turn and it hurts even when I turn over in bed. Now from Sept through about Oct. I was stiff every day, which only generally occurs in the winter months as with everyone else. Now my wrists hurt and up the center of my lower arms hurt. My grip is weaker. I have the best Dr. in the world. However, she no longer sees patients she only sees me for consults (Thank God for that). She has had me on Plaquenil 400mg per day which was supposed to keep it at bay, but it hasn't happened and melatonin (20mg) per day and now plaquenil and (600 mg) of Pentoxifylline per day. As of a visit to update my contacts the doctors discovered I had a bump in my left eye (which I forgot to make an appt to tell anyone about. You see in 8/99 my father died and I moved back home to care for my mom with alzheimer, 9/00 my sister who also helped me had blocked intestinal surgery and in 11/00 had an anurism removed. Then 3/01 my mom fell fractured her hip and died, in 7/01 I finished her business and moved back to my home. that is how I forgot my eye. They tell me the bump is actually sarcoid they found 3 in my left eye and want to perform a biopsy. My Dr. gave me 140 mg of a type of steroid like predisone but it started with a "D". That immediately cleared up the sarcoid on my arms and we are hoping I will not need the biopsy. They never disappear. I want to start a support group in my area. If anyone reads this and is interested please contact me because we need to meet and talk to help each other. God bless us all. Abaro- in the California Bay Area
January 06, 2002 - Curt I have had pulmonary sacrcoid for 9 years. I was on prednizone for about 2 1/2 years (up to 80 mg per day). I feel good most of the time. Although now I have almost constant sinus infections. I had frontal sinus surgery with no luck. I also gained 60 pounds on prednizone and have not been able to get the weight off. I also tire easily. Are there any vitamins that might help me? Thanks.
January 05, 2002 - Stacey WOW! While reading all the comments it is so nice to hear I'm not alone. I was dignosed with Sarcoid in June of 2001. My lungs spleen and liver are all affected. Nothing in my eyes so far. Doctor prescribed 60 mg per day of prednisone. I felt immediate relief. I could breathe again! My energy levels were back to normal. Because of the side effects the medication was decreased and now I'm down to 20 mg per day and can hardly breathe again! The weight gain has been awful, most noticably in my face and stomach. I see the pulminologist again this week and I plan on sharing with him the comments I found on this site. As so many of you have said, the doctors are still some what baffled so I think every bit of information I can share with him could be helpful. My PCP is a firm believer in herbal medicines, but has been unable to find anything to help sarcoid. I'll keep checking this site for comments. It is really helpful. Thanks.
January 05, 2002 - Judith I am trying to find information about any alternate or complimentary therapies that have been used to treat people with sarcoidosis. Does anyone know where I can find this info?