Sarcoidosis Patient to Patient Message Forum
 
HOMEDR. DATABASESUPPORT GROUPSMESSAGE FORUMLINKSNEWSLETTERSSURVEYSLIFESAVER AWARDABOUT US/CONTACTDONATIONSSEARCH
   

  Links to Latest Messages on this page: 

February, January, December 09,

November, October, September, August

2009 Message Archives
July, June, May, April

Add a Message of Your Own!

 



SOS-NOW ON FACEBOOK!
 


Thousands upon thousands of people have been leaving messages to this forum since 1997!

This is a great place to:

  • Meet, network and share information, symptoms and experiences.
     

  • Reach out to other patients both locally & worldwide!
     

  • Leave comments, ask questions, find friends.
     

  • Browse the messages and archives. See what others have written.
     

  • When you feel ready, gather your thoughts and post a message of your own!

  • Thanks for stopping by friends! Please come back soon!




    SOS-NOW ON FACEBOOK!


    top

    August 2009

    Name: CYNTHIA LUCAS
    Email_Address: click here to email me
    From: wilson nc
    Found_Us_Via: Internet Search
    Date: Sunday, August 02, 2009
    Time: 08:31 AM
    Comments:
    hi everyone, i have sarcoidosis since 2001. i didnt know i had the disease until i was having chest pains and they did a chest x-ray. i am not taking any medicine and never have. (Thank God) I did see a pulmonary specialist and they did alot of test. I dont feel bad, just get a little short winded every now and then and have mild chest pains sometimes but still live a normal life. I do everything i want to do. I go to work every day. I just thank God because i am still here (alive). Just have faith and know that he is able to bring us through, I do. (SMILE)


    Name: adrienne
    Email_Address: click here to email me
    From: new jersey
    Found_Us_Via: Doctor Database
    Date: Tuesday, August 04, 2009
    Time: 10:22 AM
    Comments:
    I am seeking a physician who treats sarcoidosis not in the lung. I have it in my joints and soft tissues. Please send any info as to where I can find this info. thanks , adrienne


    Name: Caprice
    Email_Address: click here to email me
    From: Chattanooga
    Found_Us_Via: Internet Search
    Date: Wednesday, August 05, 2009
    Time: 08:57 AM
    Comments:
    Hello, I am 42 yr old woman who was diagnosed with Sarcoidosis in 2000. My secondary diagnoses include, Sjogren's Syndrome, Diabetes,Congestive Heart Failure, Fibromyalgia, Sleep Apnea, Enlarged Spleen and Liver and the list goes on. I have taken plaquenil for about 5 yrs now. My sedimentation rate has always ranged from 40 to 70. It should be below 20. The company discontinued it, but it has Fish oil, Vitamin-D, Sellenium, and Grape seed extract.


    Name: Theresa Townsend
    Email_Address: click here to email me
    From: Riverside, CA
    Found_Us_Via: Internet Search
    Date: Saturday, August 08, 2009
    Time: 03:44 PM
    Comments:
    Dear All, I have had sarcoidosis since the early 1990's. It started on my skin and still is there, then went to the lungs, then went to the liver and spleen. This happened over a peroid of years. Some of the things were treated and little damage done others were untreated and more than a little damage was done. At this time in the "Sarcoidosis Game" I am in the Arthritis section of the game. I have what the doctor calls polyarthritis, which is several types of arthritis all hitting me at one time in various parts of my body. Fun, fun, fun!!! Because the sarc. in the liver went untreated it is now cirrhosis, which means no NSAIDS and no Tylenol and no relief. I was on a low dose of prednisone, but it wasn't helping so I was wend off of it. I have tried a lot of other meds and they havn't help either. I am still taking plaquenil, it helped for awhile. What I have found is although the meds I was taking weren't helping to stop and or reverse the problem it was helping to prevent the spreading of the arthritis to more joints. Much Thanks. The Cronic Sarcoidosis Gamer. Theresa Townsend


    Name: Tim Homers
    Email_Address: click here to email me
    From: Hartford Wi
    Found_Us_Via: Internet Search
    Date: Sunday, August 09, 2009
    Time: 11:55 PM
    Comments:
    Hello, I got real sick after a minor surgery in 1996. I got a fever of 104, massive night sweats, muscle pain, tremendous pain inside my bones, pain if any of my skin was touched, solid red eyes, sudden weight loss, lung pain and extreme fatigue. 3 days before xmas, I had a lymph node biopsy taken from under my collar bone. Before the results came in the doctor told me I had stage 4 lymphoma and the lymph node he removed was the worst he's seen. He said he would schedule cancer treatments for the next morning. My life literally flashed before my eyes just like in a fable. Almost instantly I remembered my entire life, places I'd been, stuff I'd done as a kid and as an adult. Nearly everything I'd ever experienced flashed before me in seconds.This is uncomfortable to say but I've seen the grim reaper beside me and it no longer scares me. It was quite an experience and it changed me. Well an hour later the results came back from the lab and the doctor came up to me and said "congratulations, it's not cancer it's just incurable sarcoidosis". Nice. Like it is written in many places, mine was sudden onset and my symptoms are far less now. I still have an enlarged liver, sometimes tough joint pain, enlarged lymph nodes, my nasal cavity is swollen, lung pain, heartburn, permanent hearing reduction in one ear, breathing difficulties and a cough which drives my co-workers crazy. I usually do ok but often when I walk I have to stop and breathe. Many times I need to stop and breathe when I walk from my car to into the office. I take supreme power naps where I collapse like a tree onto my bed, fall asleep in seconds and sleep like a steam train flying down the rails. My wife is extra-wonderful and supports my desire to sleep. Things are better but I still have sleep apnea (I use a cpap), psoriasis, real high blood pressure, bad nails in feet, sometime bad hip and joint pain, cough, lung pain and constant fatigue. I only take high blood pressure meds.This sounds crazy but when I push myself by working tons of overtime and always keeping myself driven, I feel better. When I spend a week or two at my cottage in northern Wisconsin and I let myself relax, my symptoms always seem to get worse. I got sick when I was 36. Now I'm 49 and the experience still has me focused on enjoying life and family. Thanks. Tim


    Name: Teresa Juarez
    Email_Address: click here to email me
    From:
    Found_Us_Via: Internet Search
    Date: Tuesday, August 11, 2009
    Time: 12:35 AM
    Comments:
    I would like to know with this disease if a person can return to their normal self after prednisone treatment for shortness of breath and cough? I will stop the prednisone in two weeks and am worried that the shortness of breath may come back. The prednisone helps with the breathing and some of the knee and leg pains. I can live with the knee and leg pains, but the shortness of breath and coughing is horrible as it limits me to talking one or two steps without losing my breath. Although my doctors are knowledgeable about sarcoidosis, they tell me that each person's body is different with this. I would like to know what others experiences have been. I do not plan to let this disease get the best of me.


    Name: Sanjay D
    Email_Address: click here to email me
    From: India
    Found_Us_Via: Internet Search
    Date: Tuesday, August 11, 2009
    Time: 07:35 AM
    Comments:
    My symptoms started in January, 2008 with acute pain in legs and fever. After initial 4 months, finally Doctors decided / diagnosed me Sarcoidosis. They were actually surprised as I am working in financial organization and not prone to outside infection. Now I am on steroids for more than 15 months. I have started with a dose of 40 mg and now I am on 7.5 mg. But my problem is that I can't miss my tablets even for a single day. And moreover, I have developed almost all side effects of Steroids - like Insomnia, skin infection, eye-sight, weight gain, weakness / pain in each and every bone. Very honestly, I really don't know whether these are side-effects or its something to do with my disease. I am really confused. Its sometimes very frustrating that after taking medicines for the last 15 months, I still have to bear that pain in my legs. There is no single day during these last 15 months, when I felt ease in my pains. In addition to Steroids, I have to take one tablet of pain killer (Ibobrufin or Paracetamol) and one tablet of Zolfresh / Alprex (sleeping pill). I keep my work schedule so hectic to avoid thinking too much on the disease. I have also read other messages and was shocked to know the problems everyone is facing for so many years. Wish everyone all the very best. Just pray to God about everyone's healthy recovery!


    Name: Brigitte
    Email_Address: click here to email me
    From: Tampa FL
    Found_Us_Via: A Friend
    Date: Thursday, August 13, 2009
    Time: 09:57 AM
    Comments:
    Hi , I have fibromylagia and just 2 days ago I was diagnosed with Sarcoidosis. I've read about it and I have a lot of the symptoms but they are also very close to the fibro symptoms. The muscle and bone pain is the worst and the night sweats for me are all day. The fatigue is just unbearable, I feel like life is just wasting away, I'm 51 years old and my question is does this ever stop, also my doctor told me treatment is Chemo, but I've not read anywhere or seen anyone talk about that , please help me . Where do I start, and what do I have to look forward to? Any help would be greatly appreciated. Thank you , worried of the unknown


    Name: Brenda Hendrickson
    Email_Address: click here to email me
    From: Michigan
    Found_Us_Via: Internet Search
    Date: Thursday, August 20, 2009
    Time: 12:15 PM
    Comments:
    Diagnosed 1993-Lung and bilateral optic nerve involvement, Six mos. of steroids resulted avascular necrosis 2004, bilateral hip replacement, Diagnosed 2009-Bone and soft tissue involvement right foot, Plaquenil has been recommended. Any thoughts or experiences? I keep thinking more is wrong with me, heart palpitations, fuzzy thoughts. Docs blow it off. Why are there not docs that specialize with this disease? Help !!

    *Admin. Message- Try the Dr. Database:  The worldwide directory of Sarcoidosis Physicians. It may help.


    Name: Betty Dysart
    Email_Address: click here to email me
    From: Selma, Alabama
    Found_Us_Via: Internet Search
    Date: Thursday, August 20, 2009
    Time: 02:31 PM
    Comments:
    In early 2004 I left a job because of overall not feeling well, I went to countless of doctors with numerous complaints everything from feeling of a crawling sensation all over me to boating and bawl problems, the doctors said I just want to be sick and sent me home with something for anxiety and insomnia. Soon I had developed difficulty breathing and developed a cough with thick yellow mucus and a rash, night seats and fever I finally went in to the emergency room and had a chest x-ray which revealed a mass in my lungs. At first it was diagnosed as brunchitis then Pnuemonia, soon I was admitted in hospital to under go extensive testing. My doctors thought it to be tuburchulosis, all tests turned out negative, at the same time I was experiencing pain in my eyes, an eye doctor diagnosed me with sarcoidosis of the eyes and demanded that that I be tested for the same in my lungs. Originally I was diagnosed in April of 2007 I had a biopsy done just above my collar bone, my doctors never sat down to talk to me about it. All I know is what I have read on the internet and in books. Since I was diagnosed my health and my life has gone down the tubes, My husband left me ( it seems he was satisfied with the insomnia thing ) two months after my diagnosis my mother pass away. Since her passing everyone in my family has turned their backs on me (so I guess every one in my family is expecting me to pass too). I read somewhere that keimo therapy is used to treat sarcoid, I wonder where can I go to recieve this treatment. Everyone wants me to listen to them complain about their health and be sympathetic to them, then they want me to take here take them there do this or do that for them. With all the daily aches and pains I'm having my children are all grown now and all I want to do is get away from everybody ( mainly my sisters )and get in my own corner of the nation, recieve care for my illness and wait on death.


    Name: Iolanda Barr
    Email_Address: click here to email me
    From: Northamptonshire, England.
    Found_Us_Via: Internet Search
    Date: Sunday, August 23, 2009
    Time: 04:33 PM
    Comments:
    Hi all, have had sarcoid since 1983, am now 55 years old and still often struggling with minor symptoms. Have good and bad days, mostly joint and muscle pain. Sensitive to light and sun. Would like to ask fellow sufferers about constant balls of mucous. Do any of you have this? Also waking up in the middle of the night coughing up these balls and feeling someone has their hands tight around my throat. Have found the doctors here a waste of space and not interested in support of long term problems. Guess i would get treatment etc., if an emergency as i have in the past but its in between when it would be good to have an understanding ear. Not ever met anyone with sarcoidosis, would love to be in contact with someone close to here to discuss similar experiences and ongoing management of this condition . Hope you all Stay well and symptom free.


    Name: Rebecca Goutermont
    Email_Address: click here to email me
    From: Silver Bay, MN
    Found_Us_Via: Internet Search
    Date: Monday, August 24, 2009
    Time: 09:21 PM
    Comments:
    My husband was diagnosed with sarcoidosis about 7 years ago. It is sickeningly helpful to read your comments and to know we are not alone in the fatigue, aching, shortness of breath and granuloma camp. Thank you for sharing. We have a question. Has anyone had, or is it possible to develop a granuloma in the prostate? My husband had an elevated PSA, which resulted in biopsies that were negative. The ultrasound did show a possible small cyst? We just had a recheck which showed the PSA has doubled. He also occasionally has "stabbing" pain in his privates. Anyone else? Again, I thank you for sharing. Becky



    SOS-NOW ON FACEBOOK!


    top

    September 2009

    Name: Susie Sarciod
    Email_Address: click here to email me
    From: southeast WI
    Found_Us_Via: Internet Search
    Date: Monday, September 07, 2009
    Time: 07:33 PM
    Comments:
    I recently found out I had lung sarcoid in April 2009. It seems many Dr's don't know much about it. Been on prednisone and Methotrexate. sometimes I think I feel worse now then before I knew. How do you find a good local Dr. How do you know if they are a good Dr. Any name suggestions from other people in southeast (Milwaukee, Menomonee Falls).

    *Admin. Message- Try the Dr. Database:  The worldwide directory of Sarcoidosis Physicians. It may help.


    Name: Deanna S
    Email_Address: click here to email me
    From: Michigan
    Found_Us_Via: Message Forum
    Date: Tuesday, September 08, 2009
    Time: 07:00 PM
    Comments:
    I was diagnosed with Sarcoidosis in April 09. My symptoms started in about Sept. of 08 with extreme fatigue. In January my ankles started swelling then the glands right below my ears. I got a severe case of bronchitis right after this and the cough would not go away. I had a biopsy done of my gland and it showed Sarcoid. I am grateful how quickly I was diagnosed after reading about others struggles with getting a diagnosis. I was put on Prednisone in April starting at 40 mgs. I'm not down to 10 mgs as of a week and a half ago. I've been experiencing the fatigue again and started feeling the "heavy" chest and breathing. I don't want to tell my doctor because I don't want him to up my dose of prednisone again. He is going to wean me down to 5 mgs next month. Has anyone else experienced this when weaning off steroids? How long does it take to level out? Or doesn't it? I have heard that even after the lymph nodes shrink back down you can still have symptoms. I would appreciate any information you can give me!


    Name: gretal1
    Email_Address: click here to email me
    From: Washington
    Found_Us_Via: Internet Search
    Date: Friday, September 11, 2009
    Time: 02:18 AM
    Comments:
    I would like to connect with other veterans who served during the Vietnam era and may have been exposed to agent orange who suffer from sarcoidosis to see if there may be a common link. I know of the Navy ship veterans but I'm wondering about other Veterans who may NOT have been on ship that may have served in Vietnam or been exposed to Agent Orange to see if there is a common link. My brother in law has severe sarcoidosis heart, lung. Has anyone with sarcoidosis who served in Vietnam been successful with VA as recognizing it as a service connected disability outside of the Navy shipmen? VA has refused to acknowledge he even has sarcoidosis even though private doctors have. Help please.


    Name: Diane Baxter
    Email_Address: click here to email me
    From
    : Washington, D.C.
    Found_Us_Via: Internet Search
    Date: Saturday, September 12, 2009
    Time: 08:56 PM
    Comments:
    Hello, I was diagnosed in 1974 with lung involvement. Over the years, I have experienced many ups/downs, as many of you have mentioned, involving my lungs, skin, lesions, eyes and an enlarged vena cava gland. I have had steroid injections and high enough steroids to shock my system back to good health. I also took plaquinil at some point. My advice to many of you is to stay diligent, read and ask many questions. If the Dr is not familiar with Sarcoid, keep looking to find one who is and one who can also refer you to other Drs (knowledgeable of Sarcoid) when other ailments pop up. I have been with the same Dr since day one! and he has never failed me. My new dilemma as of "today" I was diagnosed with Graves Disease (hyperthyroidism). So I am doing my homework to find out as much as I can about this new adventure to help my Dr. help me. This is how I found this website. So much more is now available than back in 1974 when very few knew about sarcoidosis. I found a 2006 study connected Sarcoid and Thyroid diseases. I'll be reading this tonight. If anyone has had this experience, I'm of course interested in connecting with you. If I can share or help others new to this disease, please let me know. Be Blessed.


    Name: Eileen Owen
    Email_Address: click here to email me
    From: WA
    Found_Us_Via: Internet Search
    Date: Sunday, September 13, 2009
    Time: 05:13 PM
    Comments:
    Is there a Sarcoid MS connection? I was diagnosed with MS 15 years ago, Sarcoidosis 5 years ago. Is there any research or publication that investigates these diseases side by side?


    Name: Myrna Kelly
    Email_Address: click here to email me
    From: Northern Ireland
    Found_Us_Via: Internet Search
    Date: Wednesday, September 16, 2009
    Time: 05:30 AM
    Comments:
    This is my first time on the forum and would love to hear from other suffers who may be able to update me on the latest treatments.


    Name: Jeannie
    Email_Address: click here to email me
    From: virginia
    Found_Us_Via: Internet Search
    Date: Wednesday, September 16, 2009
    Time: 04:39 PM
    Comments:
    I need an internist that I can turn to for this very complex disease. My pcp did not read my chart and gave me high doses of vitamin d. It was brought to my attention that this was very dangerous. I need someone who has some expertise in this field.


    Name: Julie Kelly
    Email_Address: click here to email me
    From: Sydney, Australia
    Found_Us_Via: Internet Search
    Date: Friday, September 18, 2009
    Time: 02:42 AM
    Comments:
    I have had lung sarcoid and iritis (eye - not for the last five years) for 13 years. Drs. thought I had lupus or RA - but diagnosed with sarcoid after a biopsy. Have also had brain mri's and a scare in hospital with heart/blood clot fear (turned out negative - thank God). At the moment feeling down and lousy (racking cough - GP thought it was whooping cough -, exhausted all the time and bowel/kidney problems) and have just gone through my yearly xray, bloods and ct scan. It looks like they are suggesting an endoscopy ct biopsy. Has anyone had one of these at all? I feel a bit on the scared side to say the least! Hope anyone can help. God bless and keep positive!!


    Name: william langer
    Email_Address: bill82390@aol.com
    From: marion
    Found_Us_Via: Internet Search
    Date: Monday, September 28, 2009
    Time: 07:21 PM
    Comments:
    well my mom was found to have it in her lungs 8 years ago it has spread to her stomach, small and large intestine and she had a seizer in which they discovered a brain lession is there support groups out there for family, she has been on all kinds of meds since this started I would just like someone to contact me with some info. william



    SOS-NOW ON FACEBOOK!


    top

    October 2009

    Name: Cheryl Ridings
    Email_Address: ridings55@cox.net
    From: Oklahoma City, Ok.
    Found_Us_Via: Internet Search
    Date: Thursday, October 01, 2009
    Time: 08:46 AM
    Comments:
    Has anybody been diagnosed with sarcoid of the lungs by a biopsy, when it didn't show up on CAT Scan?
    Or has anybody been diagnosed with sarcoid of the skin, only?


    Name: Michelle
    Email_Address: kre8tive.soulz@yahoo.com
    From: Pittsburgh, Pa
    Found_Us_Via: Internet Search
    Date: Sunday, October 04, 2009
    Time: 07:13 AM
    Comments:
    Hello. I was diagnosed with sarcoid in 1998. I had been sick since giving birth to my first son in 1991. started with pneumonia and by 1998, I weighed 78 pounds and was very fatigued and couldn't walk to the corner without wheezing heavily. during that time most doctors thought I was crazy. it wasn't until I developed a stye on my left eye and a lesion on my face that a visiting doctor from another country had a lymph node on my neck biopsied for sarcoid. I was put on Prednisone 20 mgs. I went into remission in 2000..after I had my second son. I took prednisone while carrying him and he now has been diagnosed with Autism. In April of this year. my left side went completely numb and weak. I was hospitalized for 10 days(the same hospital where I was diagnosed with sarcoid). I was told I had MS. Lyme disease and was put through countless tests. the doctors tried to tell me there was nothing wrong with me. so I was given Baclofen and sent home while they conduct their testing. now its been 6 months and the symptoms are worse than ever. I now have mucus in my lungs. swollen glands. nodule on my thyroid and a microadenoma on my pitutary. not to mention I caught a upper respitory infection and I cannot shake it off. I know I am going out of remission because I am so tired that it seems I cannot get enough sleep. also my memory is getting really bad. I'm so angry with these doctors who had me in their care in April..(they found my biopsy in June. was under my married name). now im back on prednisone and I am getting worse than better. I'm very scared and I have been dealing with this illness alone for over 11 years. just need to reach out and talk to like minded people. glad I found this site. Blessings to all!!


    Name: Lynda Stark
    Email_Address: StarkL24@yahoo.com
    From: New Jersey
    Found_Us_Via: Internet Search
    Date: Sunday, October 04, 2009
    Time: 08:33 PM
    Comments:
    I was just diagnoised and has anyone back successful managing sarcoidois using holistic methods, like a special diet or acupucture?


    Name: Bo Tanner
    Email_Address: botanner@embarqmail.com
    From: Ocala,Florida
    Found_Us_Via: Internet Search
    Date: Monday, October 05, 2009
    Time: 11:07 AM
    Comments:
    I was diagnosed with Lung Sarcoid in Sept.08(30% Lung Capy) and was put on Prednisone in June'09.I have to have oxygen to sleep with and any movement over 20 feet I have to carry my oxy bottle.I am using a local Pulminary Doc and he keeps playing with my Prednisone.I am currently on 20mgs daily cut down from 40mgs and this is not any help as I feel just as I did when I was diagnosed.I would like to see if anyone has this problem and where to go next?


    Name: Rebekah
    Email_Address: shari@wbyg.com
    From: OH
    Found_Us_Via: Internet Search
    Date: Tuesday, October 06, 2009
    Time: 08:14 PM
    Comments:
    I was diagnosed with sarcoid June 2008. Took plaquenil for awhile, stopped it. For the past month, haven't had any symptoms. Does that mean I'm in remission, will everything go back to normal? Will stress bring it back? Is stress a big problem with it? Can my heart be affected and me not know until I die from it and they do an autopsy? I have so many questions. I feel better today than I have in the past 15 months. Is it over? How do you know? local doctors can't help. Will blood work show it's still in me? HELP, please? I've read so many internet articles, but no real answers for my questions


    Name: Danny Slack
    Email_Address: slack2d@kochind.com
    From: Ft.Madison, IA.
    Found_Us_Via: Internet Search
    Date: Wednesday, October 07, 2009
    Time: 02:55 PM
    Comments:
    I have lost my appetite and being losing weight, but my VA doctor do not want to put me back on prednisone.She said that she has never heard of anybody losing there appetite. But I'am still losing weight and don't know what to do. I have had sarcoidisos for 19 years.


    Name: Lenora Elkin
    Email_Address: lenorashome@shaw.ca
    From: Canada
    Found_Us_Via: Internet Search
    Date: Saturday, October 10, 2009
    Time: 02:23 PM
    Comments:
    has anybody experienced severely dry scalp and B12 deficiency with sarcoid? I had sarcoidosis for years in my lungs was treated with prednisone and it cleared the lung nodules. I also have had chronic joint pain all my life. I thought i was doing ok but this scalp rash thing started last march and three different types of topical steroids haven't touched it. Also I had severe cramping in legs and feet and a horrible depression caused by B12 deficit. Are they related to the Sarcoid?


    Name: mitzi hobson
    Email_Address: mdhobson@aol,com
    From: New Mexico
    Found_Us_Via: Internet Search
    Date: Sunday, October 11, 2009
    Time: 08:32 PM
    Comments:
    I was diagnosed with sarcoid in 1996 through bone marrow. Since then, my mobility has deteriorated and I had both knees replaced last year. Success is minimal with less range of motion than desired. Few docs in NM and I am looking for other resources. Thx


    Name: Deborah
    Email_Address: Minnie220@gmail.com
    From: State College, PA
    Found_Us_Via: Message Forum
    Date: Wednesday, October 14, 2009
    Time: 08:51 AM
    Comments:
    I am 43 and I was diagnosed with Neurosarcoidosis after a brain biopsy in December 2007. I suffered for many months with severe headaches, seizures, weight loss, numbness, temporary loss of vision, tingling of the arms and legs. I was told my local doctors that I was having anxiety, possible MS. I was sent for PT, Massage, counseling sessions, spinal taps, Psychiatric inpatient, MRIs etc...It was the most frustrating experience and I was very sick. I was emergently admitted to a specialty facility for a proper diagnosis. Since this took place, I have been on Prednisone in high doses which has now tapered down. I have been on several medications to suppress the immune system. I went thru 6 months of chemotherapy (cytoxen). I am in pain every day. My hips/ knees ache even after sitting or standing for a short period of time. My head hurts every day. I am just looking for someone who may have experienced something similar to myself. I realize that Sarcoid mostly affects the lungs however, it was in my brain, spinal cord and optic nerve. Thank you for listening.


    Name: ARusso1
    Email_Address: arussoa@wowway.com
    From: Michigan
    Found_Us_Via: Internet Search
    Date: Sunday, October 18, 2009
    Time: 08:53 PM
    Comments:
    Hello, I was diagnosed with sarc by skin biopsy in 2000, although I went through the diagnosis "nightmare" for a few years prior. The first clue I had an autoimmune disease was when my eye doctor said he saw a "spot" in my eye and I might have Lupus. I went to a cornball rheumatologist who did correctly diagnose Fibromyalgia, but I knew there was still something else going on. The cornball kept telling me there was nothing else wrong with me, and even yelled at me when I told her I could not tolerate the 2nd tricyclic medication she prescribed. After that, I was lucky to find a really good rheumetologist who went through a lot with me, but he retired about 2 years ago. I have been seeing his partner but I feel like I am sicker now than I was two years ago. I am having a bad emotional time right now because I have been on steroids for about 2 years and now my adrenal glands will no longer function. I know a lot of you are familiar with the steroid rollercoaster. But every time I try to come off them, I get even sicker. I now have an appointment to see an Endocrinologist and found out I may have to be on steroids forever. I am really not happy with this. Prior to the steroids, I was on Enbrel until I had a major flare. I was taken off the biological and put on the steroids and have been on them ever since. I would like to know if there is anyone out there with sarc that has been on biological medication (Enbrel, Humira, Orencia, etc.) and what your experience was. I would like to go back on one after I get the adrenal/steroid thing under control and want to arm myself with as much info as possible, especially about any bad side effects due to mixing the biological with other prescribed medications. When I was first diagnosed with sarc I thought I was alone because I had symptoms all over (skin, eyes, joints, kidneys) except not in my lungs. All the information I could find said 90% of sarc patients have lung involvement. If it wasn't for sites like this I would still feel alone. Thanks for your input and keep your spirits up. Remember there is blue sky where there was once clouds.


    Name: Brent Thayne
    Email_Address: bthayne@pacbell.net
    From: Michigan
    Found_Us_Via: Internet Search
    Date: Monday, October 19, 2009
    Time: 03:53 PM
    Comments:
    My wife has Sarcoidosis and is loosing weight. I don't understand why and her doctor doesn't seem concerned about it. She is down to 85 pounds and I am very concerned. Anyone experiencing the same and what did you do about it.


    Name: Vicky J
    Email_Address: tvjohnson@charter.net
    From: Alabama
    Found_Us_Via: Internet Search
    Date: Friday, October 23, 2009
    Time: 01:28 PM
    Comments:
    My husband has just been diagnosed with Sarcoidosis. He has been swelling terribly. He already had psoriasis, but not his skin has red patches all over his check and legs. Right now he is on 2 different water pills to reduce swelling and then he is also on 3 different inhalers. The doctor don't want to give him prenisone right now because of all of his weight gain (fluid). The doctor wants his swelling to go down by taking the water pills and will possible put him in prenisone later. I live in a small town. Should I get out of here and take my husband to a specialist?? I know nothing about this disease. All I know is my husband has felt sooo bad for 2 months. His fingers tingle all the time. He can't breathe (extreme shortness of breath). Thanks for listening.



    SOS-NOW ON FACEBOOK!


    top

    November 2009

    Name: Janaki Rasiah
    Email_Address: janaki_rasiah@hotmail.com
    From: Australia
    Found_Us_Via: Internet Search
    Date: Friday, November 13, 2009
    Time: 06:57 PM
    Comments:
    I was diagnosed with sarcoid 11 months ago and the symptoms were Meningitis that is headaches that got worse daily, joint pains and a rash on my legs. A lymph node biopsy confirmed what the dr. Suspected. I was taking prednisone and was tapering it down to 2mg and the sarcoid flared up as iritis and then retinopathy. Now Prednisone has been increased to 10 mg again. My problem is not losing weight it is gaining weight. I have a wonderful Rheumatologist who sees me every month and I have to do a whole lot of blood tests before I see him. I don't know how long I have to keep taking the medication and neither does my dr. Some times I feel very tired and the headaches come back if I overdo things. So I now try to take plenty of rest and try not to stress for I was told by someone this could be one of the trigger factors. by the way I lost my hearing in my left ear last year and it was diagnosed as idiopathic labrinthitis but now I wander if it was to do with Sarcoid.


    Name: Brian peters
    Email_Address: designconceptsandcarp@gmail.com
    From: Lowell Indiana
    Found_Us_Via: Internet Search
    Date: Friday, November 27, 2009
    Time: 04:51 PM
    Comments:
    Hi. I was diagnosed with Sarc in July of 2008. I had extremely swollen ankles and shortness of breath. Went on pred for 6mths and am still on methotrexate. I have had numbness on mostly on left side. from gum pain to tingling in my toes. But mostly on my left side. I walk with a limp on my left side and have arm muscle pain and severe cramping. My rheumatologist says my numbers look good and I must have some muscular/skeletal injury. I hear everyone's pains and I know where your coming from. I'm socially withdrawn.

     



    SOS-NOW ON FACEBOOK!


    top

    December 2009


    Name: Timothy
    Email_Address: tim4343@gmail.com
    From: Florida/Walton
    Found_Us_Via: Internet Search
    Date: Wednesday, December 02, 2009
    Time: 09:48 PM
    Comments:
    Ok well had a heart attack in March 2009 , Dr after surgery said we need to talk told me about large lymphnodes in abdomen and chest had to wait 2 months to biopsy, had a mediastiscopy to confirm either lymphoma or sarcoidosis it was sarcodosis, well 10 months now into it it has spread from my lungs to my arms and legs, was on predinisone was tappered down now its back in lungs hurts like crazy,is there any one out there that really knows if Drs really know what this stuff is , by the way in march i was wearing 42 size pants am now wearing 34, i feel like an exsperiment in a mad Drs scary movie


    Name: Joy Robinson
    Email_Address: robinsonjoyj@yahoo.com
    From: Houston Texas
    Found_Us_Via: Internet Search
    Date: Monday, December 07, 2009
    Time: 11:04 AM
    Comments:
    I was diagnosed with Sarcoid Dec 2008. They found scar tissue in my lungs. I am really freaked out I see a pulmonary doctor but he hasn't put me on any meds and I am not sure if he is to familiar with the disease. I don't have any support for this and now I see like these black lines when i look side to side or like a white floating string. I am scared to death and always feel like I am about to die. Does anyone know of a doctor in Houston Texas. From reading it seems I won't live long. I'm 37 year old female all alone.


    Name: Earlene Gillis
    Email_Address: dan_glls@yahoo.com
    From: Brandon, Fl. 33510
    Found_Us_Via: Internet Search
    Date: Monday, December 14, 2009
    Time: 12:08 PM
    Comments:
    I'm not sure if I have sarcoid or not. I was diagnosed in 9/2007 that I did. I go to the wound center at St. Joseph wound care center in Tampa. The lesions on my legs got pretty bad. They were treating them with contreat, now using ConvaTec. Has anyone out there been diagnosed with sarcoid of the skin. I see a pulmonary Dr. for the lungs. My lungs are fine. I have places on my arms and one finger that are bad. They are beginning to come in different places. Also should I have the blood test to verify the disease. Please Email me if you have the skin disease.


    Name: MC Johnston
    Email_Address: maryclaytorjohnston@yahoo.com
    From: South Carolina
    Found_Us_Via: Internet Search
    Date: Thursday, December 17, 2009
    Time: 12:56 PM
    Comments:
    I was diagnosed with sarcoid last week...Fortunately, I have always felt great with no symptoms other than weight loss. The dermatologist found the spots on my skin and sent me to a pulmonary specialist...I have had numerous chest xrays and a catscan. They said I have filtrates in my lungs and also a high amount of calcium in my urine (which I found out can cause kidney stones) so, my dr is going to put me on prednisone so that I don't develop scarring on my lungs...I am terrified of the side effects. Has anyone taken it before without gaining weight? If so, how did you avoid it? Any help would be very much appreciated. I am truly baffled by this disease and a little scared!


    Name: Jenny from Australia
    Email_Address: c31985@hotmail.com
    From: Australia
    Found_Us_Via: Internet Search
    Date: Sunday, December 20, 2009
    Time: 11:26 PM
    Comments:
    Hi everyone, I am from South Australia. Three months ago I began experiencing sensation changes in my left leg – decrease in sensation, burning foot and a general yuck feeling. Two weeks later this moved up the left side of my torso. I was sent to a neurologist who was worried about MS. I had a full brain and spinal MRI which rejected MS but which found something inside my spinal cord at T4 resulting in spinal cord compression and change in sensation from this level down. At the time of my MRI a chest x-ray was also taken which showed inflamed lymph glands. Cancer was suspected so I underwent blood tests and a complete neck, chest, abdomen and pelvic contrast CT scan. Results showed a small number of marks in my lungs which were suspected to be granulomas. I was sent for a mediastinoscopy last week and had a biopsy taken of the lymph glands inside my chest. The results have shown I have sarcoid. My chest specialist has now said he cannot be 100% sure the thing in my spine is a granuloma as there has never been a case reported worldwide of a granuloma directly inside the spinal cord. I will be starting steroid medication this week so if my symptoms improve then I guess sarcoid is in my spine. I have no other symptoms at all besides the sensation changes. I am worried about steroids. Does anyone have any good stories about the use of steroids? It is always good to get positive information at times like this. Many thanks :)



    SOS-NOW ON FACEBOOK!

    January 2010

    S.O.S Wishes Everyone A
    HAPPY, HEALTHY NEW YEAR!

    Name: Jeanette
    Email_Address: jlhk1985@hotmail.com
    From: VA
    Found_Us_Via: Internet Search
    Date: Friday, January 01, 2010
    Time: 04:37 AM
    Comments:
    Hi my name is Jeanette and in Oct 2009 I just found out I have sarcoidosis stage 2. My uncle now 36, found out at age 24 he has sarcoidosis,and has been in remission for 12 years now. I am 24 years old, and I didn't have the major coughing like some of the sarcoidosis patients do. I just had a baby in June 2009, and in the end of Aug. and all of Sept. I had night sweats, I felt really tired, and my feet and ankles were so swollen. I went to two different doctors and i even went to the ER but they just told me to take a water pill, and that nothing was wrong. So I went to the doctor I trust the most (my ob/gyn) and told him what was going on with me. I was then referred to a heart doctor that same day i went into my doctor and had a blood test to see if I had a blood clott. My d dimer test came back high so I was then admitted into the hospital that very same day for a blood clott. Because they could not find a blood clott when they did a doppler test, they then did a CT Scan with contrast dye. I then found out that I have enlarged lymphnodes in my chest and abdomin, and nodules in my lungs. The doctors first told me that they thought it was lymphoma cancer, but after the biopsy they found out it was sarcoidosis. Before I got my resluts back I started to have horrible joint pain. I had to follow up with one of the doctors I saw in he hospital, and asked if he could prescribe me daypro 600mg, 2 tables a day (because my uncle took that for joint pain too). I started eating healthy and my joint pain has been gone since. When I went to see my pulmonary doctor he said there was no need for the steroids since I'm not having any problems. I feel that I'm doing better, but my chest xray still shows that I have sarcoidosis. I am not on steroids. I have gotten my heart checked and they said that i have peripartum cardiomypothy which is weaking in the heart muscel after having a baby. but they said its mild and it looks like its going away. i got my eyes, and kidneys checked and so far they are good. i'm happy i didn't start the steroids right away. i go back in march to get another CT Scan done, and I'm praying it will be in remission. The only problem I did have just two weeks ago I got sick with bronchitis, and the z pack didn't get ride of it, so they had to put me on something else. this is a very scarry disease to have, and i feel bad for everyone that has it. i have my days where i'm very tired, but for the most part i'm doing alot better, and i am very thankful for each good day that i have. i know that i have this disease, but i won't let it take over me, i ask god to get me through each day, and he has. some days are a struggle, because my husband works 12 hour shifts and i have a 2 year old and a 6 month old, but i get through it. i know i'm not back to normal, but i'm very thankful that i'm feeling much better. my joint pain in oct was so bad that i couldn't move out of the bed, i couldn't get up out of the bath tub. now i don't have any joint pain. for those of yall that are going through this remember god is good. may god bless you all! i pray they find a cure for all of us.


    Name: Keith Bigland
    Email_Address: keith.b@uksarcoid.org
    From: UK
    Found_Us_Via: Linked Site
    Date: Friday, January 01, 2010
    Time: 09:40 AM
    Comments:
    How can I say how sarcoidosis affects me? Well, I am unable to work, cannot concentrate, cannot walk in a straight line or for any distance, get easily confused, ache, shake and constantly in pain. What I can do is help make others aware of sarcoidosis hence along with a few others we created an information site which won a S.O.S. award for clarity. My latest attempt is to created the largest sarcoidosis petition in the world for the world's governments and health officials to take note. It started on 1st January 2010. Best wishes, Keith Bigland


    Name: MC Johnston
    Email_Address: maryclaytorjohnston@yahoo.com
    From: Greemville, SC
    Found_Us_Via: Internet Search
    Date: Wednesday, January 06, 2010
    Time: 02:10 PM
    Comments:
    Is anyone pregnant with Sarcoid? I may have to take Prednisone but am resisting it because I want to have a baby first and then get on it if absolutely necessary (am not pregnant now but trying). My dr. is going to keep an eye on me and has scheduled another lung function test and xray for April to see if my lungs have gotten worse. I am really hesitant to get on Prednisone while pregnant as the complete side effects to a baby in utero are not known...Hope everyone has the healthiest 2010 as possible!


    Name: Tessa C
    Email_Address: tess_mck@hotmail.com
    From: Sydney, Australia
    Found_Us_Via: Internet Search
    Date: Wednesday, January 06, 2010
    Time: 09:36 PM
    Comments:
    Im 22 years old and was diagnosed with Sarcoidosis two weeks ago. For me this has been a three year battle. When I was first admitted to hospital three years ago I had chronic phnuemonia, grossly enlarged spleen, severely anaemic and very enlarged lymph knodes in my chest, stomach and the heart region. Tests were conducted and found that i was also IGa and IGg deficient. Doctors thought I had Lymphoma, but after weeks in hospital and muliple scans and biopsies, cancer couldnt be found. They even took my spleen out becuase it was so enlarged. Still after testing my spleen and taking bone marrow results kept comming back inconclusive. I was diagnosed at that time with Common Variable Immune Deficiency (CVID), Bronchiactisus and had a splenectomy. The only thing that they could do was treat me for the symptoms. So for the last 3 years I have been on endless medication and monthly doses of Intragram given intraveniously at the hospital. Everything seemed to be going ok up until 5 months ago. I became very very exhausted, Slept all the time. Aching joints, headaches, blurry eyes, very weird blood results ect. They thought it could of been Lymphoma AGAIN!! Had another lymph knode biopsied which showed a rare fungal infection, was rushed to hospital for immediate treatment. I was on fungal treatment for 4 weeks when things got even worse. My lymph knodes had tripled in size and the inside of my lungs were covered in lesions all within a 4 week period. Had a broncoscopy which showed nothing, then finally I got another biopsy of the lymph knodes in my chest and the lesions in my lungs. I finally got a call to say that I had sarcoidosis after three years of not knowing. They discovered that it had spread to my eyes and am waiting to see if it had gone to my brain. I have currently been on steroids (Pretesone - 50g daily) and several other meds for two weeks, I am feeling alot better, and the only side affects that I am having from the steroids is that my skin is getting very thin and bruising very easy and that i am VERY hyperactive. Im sure that longer term use will cause more side affects. I can only sleep about 5 hours a night and the rest of the time i am on my feet doing stuff. Its starting to get really annoying..I cant stop talking..lol.. Is anyone else experiencing this?? So at this point in my life i have been diagnosed with ongoing 2 immune diseases, a lung disease and have had my spleen removed. I was wondering if there was anyone else out there who has sarcoidosis and has had their spleen removed or has CVID?? As doctors dont know much about this condition I would really like to hear from someone who can give me a better picture of what might lay ahead. I am really concerned as i have the other medical conditions in combination with sarcoidosis. Also I have heard that there are links between sarcoidosis and Lymphoma, does anyone know if this is true?? I am really tired of being 22 years old but feeling like im about 60. This has really impacted on my life, I have had to take long term leave from work and when i do go back I will have to go back part time. How common is it for Sarcoidosis to return and what are the triggers?? Please email me...


    Name: Crystal
    Email_Address: crystal_pound@yahoo.com
    From: South Bend , Indiana
    Found_Us_Via: Internet Search
    Date: Sunday, January 10, 2010
    Time: 04:50 PM
    Comments:
    I am a 37 year old female with four children, divorced of two years in April. I was married for seventeen years. I had went to my doctor which had diagnosed me with depression and hormonal imbalance. I read all the 2010 comments and stories and it sounds like myself. I as well was diagnosed with sarcoidosis in August of 2009. Before having the spine surgery I had to have, I was working two jobs trying to take care of my children. I was on call for the hospital one weekend and got called in. When I stood up to go get dressed I ruptured two disc in my back, landing me in the hospital February 6th, 2009. I had to have lumbar fusion surgery on three levels. When I woke up I felt as if I had been fillet like a fish. They had opened both front and back of me to do the procedure, but I must say in having the procedure done my lumbar pain is tolerable most days. To make a long story short, a week after spine surgery I had to have a chest x-ray done because of severe chest pain. So while I am trying to recover from surgery I am trying to figure out what the heck was wrong with the rest of my body. Like most of the stories I read I also feared lymphoma. Being in the medical field all of your career does you no justice, trust me. I was an endo tech./GI tech and a medical assistant. So I knew alot about the human body, but never had I heard of sarcoidosis. I hurt all over, my feet and hands stay swollen, my eyes get blurry, I lose my train of thought all the time, and all I want to do is sleep. The doctor I was referred to did a biopsy and finally after six months diagnosed me with sarcoidosis. Since my diagnosis I have lost both jobs due to inability to work, I am drawing a disability check from insurance I paid out at one of my jobs for eight years, in which I lose after the twenty first of this month, I have lost my medical coverage that I had. Now I cant afford my prescriptions or to go to the doctor. I feel this painful disease is getting worse in my body, and I have no clue where to go or what to do. I feel that I am at a loss. I have even went as far as to ask my ex-husband for financial help. He laughs at me and says nope and good luck. So if anyone can please tell me what to do or where to go I would so much appreciate it. I'm scared Sincerely, P.S. My symptoms feel like there worse than when I was first diagnosed, They never said if it was in my brain or eyes. They just said my lungs. They gave me an inhaler That does not seem to be helping me. Crystal


    Name: Renee Anderson
    Email_Address: imolilac1024@hotmail.com
    From: Ohio
    Found_Us_Via: Internet Search
    Date: Monday, January 18, 2010
    Time: 01:43 PM
    Comments:
    I am 33 years old and just diagnosed with Sarcoidosis. Back in june I had pneumonia and they found my lymph nodes in my chest were enlarged. thinking they were reactive but not sure my dr decided to watch them and do follow cts to watch the size. they did not go up or down in size from june thru dec so my pulmonologist referred me to a surgeon. I had a medistenoscopy almost 2 weeks ago. my dr said since I'm not having symptoms now he will not need to treat me. I have to let him know when I have a flare up and then we will talk about treatment options. I have 2 little girls I have to take care of so I pray this disease does not keep me down.


    Name: Robert S Young
    Email_Address: rsyoung8@gmail.com
    From: Bountiful, Utah
    Found_Us_Via: Internet Search
    Date: Thursday, January 21, 2010
    Time: 02:27 PM
    Comments:
    I was diagnosed with sarcoidosis last fall (mediastinal biopsy). I had sporadic night sweats then. For the past month I have been experiencing night sweats every night. Could this mean a change in the stage of my sarcoidosis?


    Name: Kay Zimmerman
    Email_Address: kzla@hotmail.com
    From: Silver Spring MD
    Found_Us_Via: Internet Search
    Date: Tuesday, January 26, 2010
    Time: 03:48 PM
    Comments:
    Can anyone recommend a dermatologist in the DC/MD area who could tell me if a persistent rash is caused by my sarcoidosis and can be treated? I appreciate your contacting me with any referrals. Thanks, Kay

    *Admin. Message- Try the Dr. Database:  The worldwide directory of Sarcoidosis Physicians. It may help.


    Name: Jenny from Australia
    Email_Address: c31985@hotmail.com
    From: Australia
    Found_Us_Via: Internet Search
    Date: Wednesday, January 27, 2010
    Time: 12:27 AM
    Comments:
    Hi all, Please anyone reading this...please respond! Have you been put on steriods (currently or previously)? If so what was your dose and how long did it take for you to notice effects? Even if you did not get any effects from steroids I would like to know - what was the dose and how long were you on it before the doctors said it probably wasn't working? I have been on prednisolone for 5 weeks today and no change at all. My symptoms seem to go up and down on a daily basis and change within the day. I can wake up and feel ok but then it gets worse during the day. My foot has been burning so bad over the past week that I can barely stand it. I wrap it in a sock and compression bandage but that does little to relieve the plaguing sensation. I have my first review next week and I am concerned about what my doctor will want to do. I am not too keen about increasing my dose, especially when doctors seem to just throw medication at you with little worry. I am concerned about using Methotrexate or Chloriquine because I have some issues with my liver and am worried about liver failure. I am wondering about my treatment options at this point. Staying on steroids for another 6 weeks may be the way to go, but after this if there is no improvement then I don't see much point in continuing with them, especially since the steroids can come with a whole range of problems of their own. I would appreciate a quick reply from anyone who has been on steroids and can give me some information about their experience. Thanks for all your help to everyone on this site and to those who have contacted me before. What a baffling disease! I hope our immune systems realise the trouble they are causing and get back to normal ASAP!!!


    Name: J. Worrell
    Email_Address: kamworrell06@yahoo.com
    From: Virginia
    Found_Us_Via: Internet Search
    Date: Sunday, January 31, 2010
    Time: 09:22 PM
    Comments:
    Hello Everyone, My name is Jewell and my mother was diagnosied with sarcoidosis in 2001. I was young then so I really didn't know what it meant. Recently we have heard news of an eye condition called Uveitis. This was an awakening call to me to learn more about the disease and find more info that can help me help my mother. I don't really know where to start and would appreciate any help I can get. I have been researching on the internet and checking out books in the library, but I would like to have more info. I have to explain sarcoidosis to my mother, siblings, and children. I want everyone to be well informed about what is going on and I need to be able to help my mother the best way I can. If anyone can help please contact me, I would greatly appreciate any help given. Thank You All



    SOS-NOW ON FACEBOOK!

    February 2010

    Name: Tobias S
    Email_Address: frambe@getmail.no
    From: Norway
    Found_Us_Via: Internet Search
    Date: Wednesday, February 03, 2010
    Time: 09:28 AM
    Comments:
    Hi, I had a lung inflamation problem some years ago with fever and short breath. I took a lot of tests but it was never concluded what my problem was. They suspected Hypersensitivity pneumonitis (extrinsic allergic alveolitis) but I do not fit with the profile of people that normally get this desease (farmers and bird breeders). However, I got better and now this problem is rare. However, last 6 months I have an increasing problem with urticaria. I also sometimes get a painful version of heart burn that I find is best treated with Zyrtec. I also sometimes get swollen lips. I am questioning myself if this combination of different symptoms may indicate sarcoidosis or if it just indicates that I have unknown allergies. I am positively tested for allergy of birch pollen and bed mites, but not for any other allergy (and I did a lot of tests). Any views on this and how I can find out if I have sarcoidoses or not?

     

     

    End of new messages


    top

     

       This website is certified by Health On the Net Foundation. Click to verify.              SOS-NOW ON FACEBOOK!
    This site complies with the HONcode standard for trustworthy health information: verify hereRead more about SOS here -- site design by LogoPending.com
    The information provided on http://www.sarcoidosisonlinesites.com/  is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician
    Site last updated: Friday, February 05, 2010 12:30 AM. You may send email to us at:
    Logopending@gmail.com
    Copyright 1997-2010 LogoPending.com All rights reserved, including the right of reproduction in whole or in part, or in any form.

     HOME DR. DATABASESUPPORT GROUPS MESSAGE FORUMLINKS NEWSLETTER SURVEYS LIFESAVER AWARD ABOUT US/CONTACT DONATIONS SEARCH