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June 21, 2001 - Lisa To Joyce and Bill, who wrote on March 19 and March 24: Joyce you asked if people experience pain in their sarcoid dx. I not only have associated pain, but have multiple dx of sarcoidosis, fibromylgia, and chronic fatigue syndrome. Some doctors don't believe in the fibro and chronic fatigue dx because sarcoid has been known to cause the same effects. The symptoms are so similar that some docs believe it is all sarc, or they believe I have all 3. I found a site online that lists sarcoidosis as a possible dx to "rule out" before confirming fibromyalgia as a dx. All I can offer is to educate yourselves in all ailments and see which criteria you fit into. I always chaulked my pain up to my fibro, but have learned that much of it is probably due to the sarc. I have also researched calcifications of the body and have learned that this is common in sarcoid (granulomas) and also fibro in muscles. The similarities are many. I hope my experience helps.
June 20, 2001 - Debbie I was diagnosed with Sarcoidosis on June 5, 2001. I ended up having a lung biopsy. I expected to be in the hospital for two to four days. I ended up staying for two weeks with a chest tube. The last month has been terrible, but I had four wonderful doctors (specialists) who worked together to find the cause of my problems. I just started on the prednisone today and feel like throwing it away after I read about and was informed of all the side effects. Is there anyone out there who hasn't experienced the side effects or has something good to say about prednisone? I am really fearful of the weight gain, moon face and mood swings. We were supposed to go on a cruise last Sunday, but had to postpone it because of my extended hospital stay. THIS IS TO DENISE who made a posting on June 17---your case sounds similar to mine. I don't have your e-mail address, but would like it. If you read this could you please send me your e-mail address. Thank you!
June 20, 2001 - Ralph Hello I was diagnosed with sarcoidosis in 1985 and I was 22 years old. I am 38 years old now. male. In the last 9 years I went from 170 pounds to 315 pounds. I have had a thyroid condition called Graves Disease and I have severe gout. I've noticed in the past my lips swell up like balloons and are numb. I have also recalled swelling of my tongue to the point where I couldn't even eat without biting my tongue. I also am very fatigued and lathargic; diarrhea is my normal stool; and I am now very depressed and feel robbed of my manhood. Thirty-eight is too young to have grey hair and a cane. Social Security has been denying me and Vetrans is reluctant all of except the BUSH admin. passing the vets thing in 1996 helped me to get my meds. I have a fiance who is a christian woman of 32 years and has been my only real hope to hang in there. People who suffer and people who going to suffer, all I can say is become a vegetarian don't smoke and don't drink, find a good church, and live a happy life.
June 17, 2001 - Denise I was diagnosed with sarcordosis on Jan. 04 2001 a day I will never forget. For about three months I thought I had the flu. I had a rapid weight loss couldn't eat anything without feeling sick to my stomach. No matter how I felt I continued to work. I thought maybe I had caught a cold from one of my patients.but that wasn't the case. I went to work on Jan. 1 2001 and bathed 4 patients and remember feeling so tired and weak I had to sit down. I was so sick I called my supervisor and told them I had to go home. I came home that day; it took all the strength I had to climb up the steps to get into the house. I told my son to run me some bath water. I could barely take a bath without getting out of breath. I remember getting into bed couldn't sleep because of all the coughing I was doing. The next day I pushed myself out of bed feeling bad and went to work; got to my patient's home, bathed her and became very weak. I thought it was from not eating breakfast that morning or maybe from my diabetes. I didn't pass out or anything just became very dizzy and hot couldn't breathe. She asked me if I was okay I said no I don't feel good. I asked her to called the paramedics and my job for me to let them know what was going on. I also asked her to call my mom and tell her to meet me at the hospital. When I got there the doctor thought it was my diabetes but my blood sugar level was 189 which was good for me. My blood pressure went up; my heart rate would not go down; I started having chills and fever. They did a EKG which was normal. I was admitted that morning after a series of tests and CT scans. They still did not know what was wrong with me. My doctor came in and the nurse told him that I was not doing good at all. He then replied you might have pnuemonia so he ordered a chest xray. About 9;30 Jan. 4 a pulmonary doctor came in to talk to me. I was told that there was some swollen lympnodes in the middle of my chest, that's why I was having difficultly breathing. He also informed me that it might be lymphoma (cancer of the lymph nodes) at that time I didn't know what to think I was speechless then he talked about putting in a shunt for chemo but they had to determine what it was first. The next night a another doctor came and talked to me to let me know what they would be looking for. He said it might be Hodgkin's Disease, tuberculosis, and a number of other things. All the time he was saying this, a lot of things were running through my head. My first thought was lord I work with all types of patients and there is no telling what one of them might have passed on to me. Then I thought if I have cancer how can I deal with it because I see it everyday with my patients. I often comfort the family members through their times of needs. I asked this question lord who can I turn to for comfort. On Jan.6 2001 I was wheeled into the operating room didn't know what to expect. They did my biospy, I have this scar on my neck that is always a reminder to let know what I went through this year. They went in through my windpipe to get a sample of my lymphnode. My test was negative for cancer but positive for sarcordosis. I didn't know what to think. I said lord I have diabetes, high blood pressure that I finding hard to control, how can I handle this. On Jan 7 2001 I was going home and spiked a temperature and had to stay one more day. I went home on the 8 of Jan. My family and fiance were very supportive. My pulmonary doctor didn't start me on the prednisone until the 16 of Jan. I really hated that because the way that medicine made me feel. I felt bad all the time. I was having mood swings snapping at my kids for no reason at all, couldn't eat at first, gained 20 pounds, miserable because of the weight gain. My blood sugar stayed sky high, that meant I had to take double the amount of insulin a.m and p.m. It seemed like the prednisone was doing more harm than good but I stayed on it. I had to end up taking lasix 40 mg a day for fluid retention. My body was all messed up from all the medicine that I was taking. I wouldn't wish this disease on my worst enemy. I have been under the care of three doctors. Recently I went to work on April 18 2001. Upon leaving home I opened the door and the sun hurt my eyes. I thought that it was just me getting up so early in the morning. I went on to work. Later that day I took my daughter to the doctor, came home, took my bath, turn the bathroom light on, the lights hurt my eyes so I took my bath in the dark. I tried to watch T.V. the glare from the screen hurt my eyes also so I just turned it off. I finally went to sleep and about 2:00 that morning I got up to go to the bathroom turn the light on and I was in so much pain as if I was hit in the eye with something. I turn the light off quick and called to my daugther and told her to turn off all the lights in the house I could see in the dark with no problem. Even the light from the alarm clock hurt my eyes. I tried to lay back down but was still in pain so I got my daugther to give me a pain pill. The pain eased a little but not much so I called my fiance and he came over to a very dark house. I was so scared for him to turn the light on because I couldn't stand that pain. He took me to the ER. The lights were so bright in there I held the towel I had to my face tight. The doctor tried to examine my eyes. I was in tears from the pain. He didn't see anything in them. I told him that I was diagnosed with sarcordosis in Jan. so he immedately called a eye doctor who told him my condition (sarcoid & diabetes). I had a appointment that same morning & the eye doctor comfirmed the sarcordosis is what was causing me the pain. He then started me on eye drops 4 times a day, then 2 times a day. I'm still on them today. I just went to the eye doctor on the 13th of this month. They did a visual field. Now he is questioning if I have ever had a stroke. I replied in shock what? according to my visual field I look like a person that has had stroke. So I have to go back next month and they will repeat the test. I have faith in the good lord that everything will be alright. I asked anyone that may be reading to please keep me and my family in your prayers and I will do the same. May god bless you and keep you safe in his loving arms.
May 31, 2001 - Irene I am a 40 year old hispanic woman who was just diagnosed with Sarcoidosis. I have just started taking prednisone. How long before I will begin to feel the effects? Today I had difficulty breathing after inhaling shaving cream that the kids in the class were using to clean off the tops of their desks. I know doctors claim that they do not know what causes this disease but, I worked for a major home improvement store which did not allow employees to use sweeping compound while sweeping up the concrete floors. I know for a fact that I was forced to inhale dust mixed with concrete, insulation particles and lumber scraps which have been treated with chemicals. How many of us have been exposed to this type of environment and how much of this is related to Sarcoidosis?
May 24, 2001 - Tobey My husband has sarcoidosis. We found he had it about a year ago. He has been on steroids for most of that time until recently when he told the doctor he couldn't take them anymore. Our doctor put him on another drug called plaquenil. He feels a lot better now. He doesn't have shortness of breath as often. I believe it is working better than the steroids did. If anyone else is on this medicine. Please let me know how it is affecting you.
May 10, 2001 - Petra It is such a pleasure to find this site. It seems that most doctors don't know a lot about this disease. Nonetheless, they found a way to diagnose me with it. I'm not exacly sure when my symptoms started. I have been "not right" for so long. It all came to a head in March of 2000. Sarcoid presented itself to me in the way of an enlarged spleen. What's ironic was that I saw a dermatologist a few months prior to seeing my MD and was told long after my surgey and well after many tests, that he recommended that I be tested for sarcoid. My MD never mentioned his notes until a few months after surgery. My spleen was 4 pounds. I have been reading a lot of posts and I have yet to see one that talks about the spleen. The doctor originally thought I had lymphoma. I had countless catscans and blood tests. Thank god it wasn't cancer. They found a high percentage of granulomas in my lymph nodes. They were the clue that it was sarcoid. I have been okay since the surgery. I have gained a lot of my weight back but now I'm getting these patches on my skin. They look like lesions or really black dry skin. Is anyone else experiencing this? If so what are you taking that helps?
May 09, 2001 - Alice I was diagnosed with Sarcoidosis in August of 1999. I am doing ok now. My symptoms were coughing up blood.
May 04, 2001 - Peter My cousin suffers from Sarcoidosis and I'm a acupunturist. I treat him 3 times a week with low level laser therapy, sticking closely to traditional zang fu scripts. He has great results, but when he gets too cocky he misses appointments and suffers. I am also strict on his diet and his exercise; but he is on no medication and has a normal life. Therapy for this shitful disease is like brushing your teeth, if it's not done regular don't expect to smile. I live in Brisbane and I don't mind helping anyone, free of course. I often say to my cousin remember the 3 B's Be Brave, Be Responsible, Be Here When I Say Good Luck
April 25, 2001 - Elsie I have recently been diagnoised with Sarcoidosis. They biopsied lymphnoids from my neck. I have spots on my chest and my spleen. I was all alternative medicine until this happened. I am also on immune therapy treatment. They are starting me on steriods and I am wondering if the immune therapy treatment can be part of a cause of this flare up of the sarcoid. Plus can taking steriods and immune therapy treatment hurt each other. I asked my doctor and they do not seem to think so. I am not so sure. Thank you. E
April 24, 2001 - Paula My mother has been ill for about six months now. She has been to several different doctors and neurologists, yet no one can seem to find out what is wrong with her. She has lost the feeling in her right arm, part of her left arm, and part of her right leg. She has shortness of breath and cannot walk without a walker or cane. Her condition seems to get worse everyday. I don't know if this has anything to do with sarcoidosis or not. It seems to have some of the same symtoms though. If anyone can help please post a reply.
April 18, 2001 - Elsie I would like to know if this is allergy related. I have a lot of food allergies. I can eat wrong and I hurt. I just learned that I have sarcoid. They want to start me on steroids and I would love to find an alternative route if possible. I do believe this is out of my hands. Thank you for your comments.
April 14, 2001 - Anna Hi there. My name is Anna and about 8 months ago I was diagnosed Sarcoidosis. I started taking cortisone in form of prednesolon. I started with a very high dose but after a while I started taking less and less and after 4 months I stopped completely. After 2 months without cortisone I started getting the symptoms back and my doctor put me right on the medicine again. I started with 25mg a day; now I take 10mg a day and I will be going to have an x-ray in a week. What is the cause of this disease and why can't I get rid of it? I also have silicon implants, do you think they have something to do with it? I don't have much problem because of Sarcoidosis as long as I take cortisone. I work out, I like aerobics and spinning. Why can't I get rid of it? Is it chronic? I can't take prednesolon the rest of my life??
April 05, 2001 - Chris I am a 26 year old white male suffering from Sarcoidosis. This was first diagnosed 20 months ago by my local GP. I actually visited several GP's in my local area over a 3 month period before I was properly diagnosed. It was a really bad as one doctor even went so far as to say that I had an STD that Italian soccer players were getting. During this time I was very emotional as I didn't know what was wrong with me, my temper was short. My symptoms included severe pain in the feet, bad joint pain in my knees, ankles, wrists and elbows, shortness of breath and extreme tiredness. My Gp thought I may have tuberculosis or Lymphoma and I was sent for a chest X-ray where they located a major lump in my lungs about the size of a squash ball. I was admitted to hospital the next day where a biopsy was taken of the lump. Once Cancer was ruled out, I was told this is a Sarcoid. I was treated with prendisone on and off for 6 months but removed myself from these drugs as I was really cranky on it. I have had several flare ups over the last 18 months with symptoms of Tiredness and pain in my feet again. The only treatment again was prendisone. Currently my condition has become a lot worse; I have had to stop playing footy and I'm giving my friends a wide berth as I'm always tried and cranky. I seem to have found that this condition hits me hard when I am over-doing things a bit. Lately I am doing the work of 2 people and am working about 60 hours a week. My stress levels are elevated and I really do believe that this helps bring these attacks on. I would like to chat with anyone who wants a sympathetic ear as I know exactly what your going through; ICQ 8241880 Cheers
April 05, 2001 - Julie Hi. My comments are for Cheryl and any other sarcoid patient in the UK. Cheryl, I too have multi systemal sarciod and like you was being treated by individual specialists and none of them seemed to communicate with each other. I became very frustrated; I contacted a specialist in London Royal Free Hospital named Hewe Beynon, and he has been my savior. Contact him at the Royal Free Reumatology Dept and get your doctor to refer you. He deals with the whole person, and he doen't make you feel like a hypocondriac; I'm sure you will understand that comment!!!! Another comment I wanted to make was for Bill, the gentleman who had fibromyligia. This is often a secondary disease that runs along with any chronic disorder. It is mainly a side effect of sarcoid, and sleep is a very good help, apparently because chronic pain prevents sufferes from going into a deep sleep. The body doesn't heal and rest, therefore you become more painful and so on. It's a vicious circle, so sleep. And that is also a really good tonic for most sufferers. Amytiptyline is a real saviour for me I swear by it. Good luck. Everyone remember we are not alone even though it may feel like it at times.
April 03, 2001 - Cheryl Can anyone help with further information on sacardoisis? I was diagnosed finally in 1983 after the doctors first thinking I had TB and then Cancer. It took three years to discover what was the matter with me. The main area that is effected with me is my left lung and my eyes, my left eye, being quite badly damaged. I have had trouble with my Kidneys, Liver, Heart, Taste, the muscle in my fingers have collapsed. At the moment I am off medication but here in England there does not seem to be a doctor that specialises in multi-organ sarcoidosis, and therefore can only tell what is happening in their given area. Although I have had this for more than twenty years I still do not really know what it is. It is not a morbid curiosity I think it is because that I am feeling well at the moment that I am interested and would like to know. Also because of the multitude of medicines that I have been on I am now trying alternative medication and the therapists want to know exactly what it is and I cannot tell them. I would be grateful for any information that can be sent to me. Please respond here. Thanks.