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    SOS-NOW ON FACEBOOK!

    January 2011 Happy New Year!

     

    Name: louis st-georges
    Email_Address: ti_loup1963@hotmail.com
    From: sturgeon falls ontario canada
    Found_Us_Via: Doctor Database
    Date: Monday, January 03, 2011
    Time: 08:09 PM
    Comments:
    hi i am up here in the cold weather and was diagnosed withh pulmonary sarcod 5 years ago and now it has reaches my stomach hear kidneys eyes and and in he last 2 mths full flares of arthritis in my lower ankles and and left side of my body .and fatigue has set back in as i am on 35 mg of prednisone and have learned to put up with the insomnia and lack of intimacy with my spouse...not...i have found it very difficult to find any docs that know what they are doing up heare when it cmes to sarcoidosis.and have found 1 in quebec that is 8 hrs from me ..if any canadians or any 1 has any suggestions as i am 4 hrs norh of toronto canada .i wuld appreciate it or any support s it is hard to find support up here as this is farely new here as far as i can see..by the way happy new year ,,everyone ..thks louis


    Name: Karen A.
    Email_Address: tambrose@bellsouth.net
    From: Greenville South Carolina
    Found_Us_Via: Internet Search
    Date: Thursday, January 13, 2011
    Time: 05:48 PM
    Comments:
    Hi Everyone! I am 53 years old and was diagnosed with sarcoid when I was 27 years old. It was diagnosed through a bronchoscopy following shortness of breath and dry, hack coughing. I took prednizone for two years and when weaned of it, did great and felt great! Last year, I was diagnosed with Grave's Disease. I chose to treat the symptoms instead of having my thyroid removed. Lately, I have had serious lower back pain, intestinal irregularities (excessive gas, extra bowel movements, or days without a bowel movement). I also feel a pressure in my left rib cage. No skin lesions or rashes. What are the symptoms when sarcoid affects your spleen and intestines? Does anyone have sarcoid in the thyroid that was diagnosed as Graves instead?


    Name: Marsha Adrienne
    Email_Address: mardavnya@verizon.net
    From: Brooklyn, New York
    Found_Us_Via: Support Group Database
    Date: Wednesday, January 19, 2011
    Time: 05:48 AM
    Comments:
    My brother was diagnosed with sarcoidosis over 20 years ago. His disease is now in the advanced stages. I need help finding proper medical care for him and a long-term nursing home or other care provider. My brother is 61 years old, lives alone, and is unable to care for himself. PLEASE HELP ME!


    Name: Karen L. Wilson-Maye
    Email_Address: specialk2011tai@yahoo.com
    From: Baltimore, Maryland
    Found_Us_Via: Online Support Group
    Date: Wednesday, January 19, 2011
    Time: 11:00 AM
    Comments:
    I was diagnosed with sarcoidosis about 12 years ago after doctors discovered also that I was suffering with Arnaud Chiari malformation of the brain. I have had several decompressions and now have caught a head cold. Head colds and hydrocephalus do not go together, as I am now very dizzy and unable to stand straight. Has anyone else had this symptoms whenever they have a cold?


    Name: Marsha Wilkins
    Email_Address: mwilkins@windstream.net
    From: Ohio
    Found_Us_Via: Internet Search
    Date: Friday, January 21, 2011
    Time: 10:22 AM
    Comments:
    Hi All, In 2003 I was told I had lung cancer and given 3-6 months to live. A biopsy, thankfully, diagnosed it was Sarcoidosis. After years of struggling my doctor tells me I am one of the 10% or so that has 'chronic' sarcoidosis, causing extreme fatigue for which there is no cure. I can sleep 12-14 hrs a day and spend the rest of the day on the couch. I have to force myself to do things that mentally I WANT to do, but my body says no. Exercising, even moderately, causes a set back. This is very depressing as erxercising has always been a very important part of my life - mentally and physically. After years of struggling a doctor prescribed Focalin XR (not the generic brand), which is primarily used for ADHD, but for some patients with Sarcoid it is very effective. I was one of the lucky ones and felt I had finally gotten my life back! Unfortunately after 2 years my insurance has taken this medication off its formulary list and will no longer pay even a portion of the cost using the explanation this drug is for ADHD and not Sarcoid. Next we tried Concerta 54mg. It isn't nearly as effective and again is not covered under my insurance plan. Please, does anyone have a suggestion for something that might help? My thoughts and prayers to all Sarcoid sufferers!


    Name: Rubi Ivery
    Email_Address: rlivery14@gmail.com
    From: Miami, Florida
    Found_Us_Via: Internet Search
    Date: Tuesday, January 25, 2011
    Time: 08:05 AM
    Comments:
    Hello there are there any support groups in Miami,Florida.


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    February 2011

     

    Name: Jacob Christensen
    Email_Address: jacobalma@gmail.com
    From: Utah
    Found_Us_Via: Internet Search
    Date: Saturday, February 05, 2011
    Time: 09:29 PM
    Comments:
    My name is Jacob Christensen, 29 years old. I was diagnosed with sarcoid about a year and a half ago. the last three months it progressed severely, taking me from running around 7 miles a day, to barely being able to climb a stair case without having to sit down and catch my breath. I have been on 50mg prednisone for 2 months now and am not really having too many side effects, I go to bed around 9 with melatonin and am up by 5. I have noticed a HUGE increase in my appetite and have gained about 15 lbs so far. I am starting the p90x program next week to help keep myself in shape underneath the weight gain that I have heard is inevitable with the steroids. I miss running, but between the progression of the disease and the cold weather, I have been stuck inside and I HATE running on a treadmill. though I do every few days til I start coughing too hard to continue. I really hope the steroids make this stuff go away without causing other problems. I had a rough year after I got diagnosed and relapsed to alcoholism. Though soon after I started the meds I figured I better just accept the things as they are and sobered up. 41 days clean today. I am also in full time college on my way to a psyche degree. I wish everyone luck with their specific situations. This is a crazy disease in that we know very little. and watching House doesnt help the unknown of it's possibilities!


    Name: Carol Crouch
    Email_Address: capezner@gmail.com
    From: Denver,Co
    Found_Us_Via: Internet Search
    Date: Monday, February 07, 2011
    Time: 10:17 PM
    Comments:
    I,too,have sarcoidosis. Was diagnosed in 2007. It is scary at first,but have found that reading everything I can find on the subject on the internet in research done,possible causes,helps take out some of the mystery and fear of the unknown. Have tried Methotrexate and Prednisone tabs. What helps me more when feeling shortness of breath upon walking outside is Flovent inhaler(a form of Prednisone). My husband and I are in Denver,Co. Breathing in the cold,dry air in winter have found is causing shortness of breath.Am in stage 3 now,but have been told by my doctor that it doesn't have to progress to stage 4. It can remain in stage 3. That is comforting,believe me. It's tiring in energy levels,I know. Have learned to stop frequently when walking our dog and take a few breaths whenever needed and pace energy when doing housework or errands.And drinking more water,juices, eating p rotein and fruit during day helps.Just do what you can.Try not to push it too far. Hope this can be of some help.Know it can be hard,frustrating,scary, kind of depressing at times too. One day at a time(can be easily said,but yet true)


    Name: ANNA walth
    Email_Address: awalth1@yahoo.com
    From: fargo nd
    Found_Us_Via: Online Support Group
    Date: Thursday, February 10, 2011
    Time: 08:53 PM
    Comments:
    IVE GOT SARCOID FOR MANY YEARS, WOULD LIKE TO HEAR FROM SOMEBODY ELSE THAT HAS IT


    Name: nicey1966
    Email_Address: nicey1966@aol.com
    From: new jersey
    Found_Us_Via: Internet Search
    Date: Sunday, February 13, 2011
    Time: 01:22 PM
    Comments:
    hello i to was diagnoise with sarcoidose went for a xray havieng carpal tunnel surgery that's when i found that i had it i feel find the only problam i'm haveing is that i have spots that's comeing out on my face im useing cream my dermatologist prescribe but it seems like its not helping im depress i been useing a lot of creams nothing seems to work if theres any one with any solution please respond back


    Name: Wendy M
    Email_Address: windybay5@comcast.net
    From: Massachusetts
    Found_Us_Via: Internet Search
    Date: Wednesday, February 16, 2011
    Time: 06:16 PM
    Comments:
    I was just diagnosed with sarc by a biopsy. seems causes of sarc can be environmental. I am wondering if applying bare minerals powdered make-up every day and breathing it in for some years now could of caused this. Any thoughts on this?


    Name: Andy Thomson
    Email_Address: andy@thomsondesign.co.uk
    From: Chelmsford, Essex, UK
    Found_Us_Via: Linked Site
    Date: Wednesday, February 23, 2011
    Time: 07:38 AM
    Comments:
    This is the first time I have done an serious research on my condition and so I thought I would share my story as I have been living with sarcoid for 30 years. I was diagnosed via skin biopsy in 1981 (aged 27) with sarcoidosis of the lungs/lymph nodes. I remember suffering from joint pains as a teenager, but the cause was never identified as it would come and go. When I was finally diagnosed, I had been suffering from a dry cough for several weeks and went to my doctor because I couldn't get rid of it. Something about my symptoms tipped him off, as he sent me for the test. Luckily for me I have not had it very badly. However, for the first few months I was very tired. I just about managed to go to work, but by the end of the day I was wiped out and simply went to bed once I got home. The tiredness slowly improved over the next couple of years and the frequency of the chest xrays and the battery of other regular tests was reduced over about 10 years until I was finally told I was in remission in 1991. Since then I have had times when the cough comes back for short periods, but not serious enough to need any treatment other than listen to my body and take things easy for a while. I currently have the cough again, but my reason for researching now is that I also have psoriasis like patches on my legs and feet and the itch is driving me mad! I have tried all the usual moisturisers and topical steroids, but they don't work and in fact the steroid made things worse. Aloe Vera gel gives some relief from the itch, but doesn't seem to be doing anything else, so I am still hunting for something effective. I count myself pretty lucky, really. Although I have times when the sarcoid impacts on my life, it has never seriously stopped me from doing all the normal things and I carry on pretty much as normal.


    Name: deborah
    Email_Address: cfn@dodo.com.au
    From: australia
    Found_Us_Via: Internet Search
    Date: Thursday, February 24, 2011
    Time: 11:46 PM
    Comments:
    i have had a visit to doctors for swollen ankles joint pain, can't walk very far at all. they did blood tests white cells o.k. they did xray chest got a smudge did a ct scan says sarcoidaosis or lymphoma outside of lungs, and nodes in both lungs, just had lung biopsy yesterday for verification of what it is?? will let you know


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    March 2011

    Name: orviaal mosley
    Email_Address:
    From: kansas city, missouri
    Found_Us_Via: Internet Search
    Date: Thursday, March 24, 2011
    Time: 06:44 AM
    Comments:
    just found out a few mths ago i have sarcoidsis, i am 36 with 2 children and 2 grand children, i need help on how to handle this and to talk to people for support. and what help is there in the community that can help me i need help


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    April 2011

    Name: Dr. Catherine Roberts
    Email_Address: c_roberts31@msn.com
    From: Atlanta, GA
    Found_Us_Via: A Friend
    Date: Thursday, April 14, 2011
    Time: 05:58 PM
    Comments:
    Sarcoidosis Awareness Month Please join us Sunday, April 17th at 3:00pm. at Moe's Southwestern Grill on Mt. Zion Rd, Morrow GA to bring about awareness to this disease. We will also eat some wonderful burritos.:)


    Name: Betty C.
    Email_Address: Bilbet721@aol.com
    From: South Carolina
    Found_Us_Via: Internet Search
    Date: Friday, April 15, 2011
    Time: 12:01 PM
    Comments:
    Have had sardoid for 5 yrs. and it was only confined to my lungs but it is still active and now have marks on my face, which I really hate. Doctor suggested dermatologist and the medication plaquenil. Anyone have any experience with this med and clearing the face and scalp. Thanks.


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    May 2011

    Name: Trijendra Vikram Srinet
    Email_Address: trijendravikram@gmail.com
    From: Mumbai
    Found_Us_Via: Internet Search
    Date: Monday, May 02, 2011
    Time: 12:24 PM
    Comments:
    During a pnemonia attack my Uncle is dignosised of sarcoidosis which is supported by symtoms like joint pain of 7 months, skin rashes and finally breathing problem. Now also he is fighting of disease but his symtoms suddenly disappeared and now left with breathing problem. with this platform I request to suggest me Doctors available in India who can treat him and make him dependent. Waiting for an early reply.


    Name: Steven Couch
    Email_Address: scouch@apexelectricandsign.com
    From: Greenfield, IN
    Found_Us_Via: Internet Search
    Date: Monday, May 02, 2011
    Time: 02:56 PM
    Comments:
    Hi. I was diagnosed with Sarcoidosis March, 2011... It is currently located in my chest lymph nodes only. I took a 30 day prescription of Prednisone resulting in some nodes getting larger. I have had several x-rays, cat scans, pet scans, blood tests, etc. It seems as every doctor has a different opinion of the treatment (or lack of treatment) recomended. I have visited so many sites looking for a simple answer to this, (obviously) with no luck! I guess I just wanted to post and be a part of this site. God Bless you all!


    Name: Linda T.
    Email_Address: mammalinda6060@comcast.net
    From: Maryland
    Found_Us_Via: Internet Search
    Date: Monday, May 02, 2011
    Time: 08:04 PM
    Comments:
    I have had Sarcardosis for about 6 years. I was in remission for a short while, however even in remission some of the symptoms still exist. The last few years I have had balance problems and tingling and burning in my feet, toes, legs and tips of my fingers. The body pain is not as bad as it use to be, but the tingling and burning drives me nuts. I was on Gabapentin but was recently the doctor switch me to Lyrica which is expensive. I was taking Hydroxchloroquine but have been off of that for a few months. I use a cane for the balance problem. Don't use it much at home, but I do when I'm out. If I sit down it's hard to get up; when I'm walking I stumble like a drunk. My legs are weak and I can't stand for to long. When I go shopping I always have a basket it holds me up. I'm on Advair and Abuteral for shortness of breath. Some days I seem to have a lot of energy and the next few days I can hardly function I'm so tired. I recently had a bunch of blood test for the neuorpathy. I go back to the neuro doctor this week to get the results and more test. Thank God for this site because family and friends really don't understand this disease and what you go through. I don't want to complaint but venting sure helps. Keep the Faith, Trust in the Lord.


    Name: Chad B from VA
    Email_Address: vtcrb@yahoo.com
    From: Virginia
    Found_Us_Via: Internet Search
    Date: Tuesday, May 03, 2011
    Time: 03:19 PM
    Comments:
    I have had Sarcoid for over 10 years now. Started in My Lungs then moved to my Liver. My lungs have been ok, but recently i have developed cough and some shortness of breathe. Also have sweats and severe fatigue come back. I know some say when it comes back in an Organ already effected it is even worse than 1st time. I just wanted to hear if anyone has had this happen to them.


    Name: Stephanie Posey
    Email_Address: stephposey04@yahoo.com
    From: Macon, GA
    Found_Us_Via: Internet Search
    Date: Tuesday, May 03, 2011
    Time: 03:47 PM
    Comments:
    I'm actually searching for help for my mother-in-law, diagnosed in early 2010. She is extremely ill with Sarcoidosis, no one in this area seems to know how to treat her. No one will get on board and communicate due to constant "Insurance Issues". Even Mayo Clinic has rejected her, saying they don't take her insurance. I'm terrified I'm going to lose someone I love dearly to this disease. She is extremely swollen from the prednisone, other than that, I cannot tell any difference since she began taking the drug approx 6 wks ago...if anything she is worse! She has been told that all of her major organs, especially lungs, are covered in granulomas. She has sores all over her legs and chest area that are from the sarcoid. Any advice a fellow sufferer or family member could give me would be most appreciated! Thanks!


    Name: ChadBVA
    Email_Address: vtcrb@yahoo.com
    From: Virginia
    Found_Us_Via: Internet Search
    Date: Thursday, May 05, 2011
    Time: 02:06 PM
    Comments:
    I have had Sarcoid for over 10 years. I was diagnosed when I was 22 through a lung biopsy. It was originally thought that I had Cancer. I was told it would go away in 6 months. Never was I told that in some patients it never goes away and can move to other organs. I saw a lung specialist for about 5 years and then stopped going. I have never taken ANY of the steroids they want to give us, because of the side effects they cause. In 2005 i began to experience sharp stabbing pains in my upper right side. Had blood work done and was then scheduled for Liver biopsy. Confirmed that it had moved to my Liver as well. I have been hospitalized 2 times since then, had 2 more Liver biopsies. I still experience the pain in my side and the fatigue. The reason for this post is because I think it may be coming back in my lungs again. I have had a nagging cough for over a month, bad sweats, severe fatigue and just feel like poop. Just wondering if anyone has every had it come back in organ and if so is it milder or more severe than the 1st time. When I first had lung involvement I lost 35lbs and thought I was not gonna make it. I appreciate any feedback


    Name: Dana Eigner
    Email_Address: dana.eigner@hilton.com
    From: California
    Found_Us_Via: Internet Search
    Date: Wednesday, May 11, 2011
    Time: 06:23 AM
    Comments:
    Is there a connection between Sarcoidosis and Peripheral Vascular Disease? Anyone experiencing this problem?


    Name: Linda Graffius
    Email_Address: swedemom@verizon.net
    From: Erie, PA
    Found_Us_Via: Internet Search
    Date: Wednesday, May 11, 2011
    Time: 02:37 PM
    Comments:
    My good friend has sarcoidosis. Her skin, lungs and kidneys are affected. Can anyone recommend a specialist in the Pittsburgh area? She is in a crisis right now and needs help A.S.A.P Thank you very much.


    Name: robert torrez
    Email_Address: lionsfan128@yahoo.com
    From: melbourne, florida
    Found_Us_Via: Internet Search
    Date: Saturday, May 14, 2011
    Time: 01:00 AM
    Comments:
    Hi I was diagnosed with sacoidosis of the heart in dec 2009 and ended up with a heart transplant in feb 2010. I'm looking for a group close to my area or needing more info about sarcoidosis. Thank You


    Name: lawanda
    Email_Address: lrt8063@aol.com
    From: virginia
    Found_Us_Via: Internet Search
    Date: Saturday, May 14, 2011
    Time: 04:49 PM
    Comments:
    hi, Im a 33yo was dx with sarcoid Feb 2010. What a life changing event. I have sarcoid in my eyes, lung,and skin. I never heard of this condition until I was dx. How scary was it for the doc to tell me there is no cause or cure for sarcoid. Been having everything from depression, pain, confusion, blurred vision and many more issues. I have been on the lovely prednisone for lil over a yr started @ 40mg now presently on 5mg. Doc change to plaquniel but it gave me severe chest pains. Then wanted me to take methotrexate 2.5 but after reading side effects refused. My eyes and joint hurts all the time. I feel as thought no one around me understands whats going on. Like its all in my head. I wish it was that easy. I talk to God everyday, I dont ask question why i have sarcoid. I just hope and pray one day he will bless someone with the gift of a cure for us.


    Name: johnnybg
    Email_Address: rjgoode@bigpond.com
    From: Australia
    Found_Us_Via: Internet Search
    Date: Friday, May 27, 2011
    Time: 09:46 AM
    Comments:
    Neurosarcoidosis diagnosed Jan 2011 after 4 months of testing. 41 yo male


    Name: Mike O'Neill
    Email_Address: clanoneill@comcast.net
    From: Troy, MI
    Found_Us_Via: Internet Search
    Date: Monday, May 30, 2011
    Time: 11:02 AM
    Comments:
    I am bedridden with something diagnosed as neurosarcoidosis. I am seeking information and sources of support.


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    June 2011

    Name: Paula Stewart
    Email_Address: stewartpaula2011@gmail.com
    From: Montreal
    Found_Us_Via: Online Support Group
    Date: Monday, June 13, 2011
    Time: 08:40 PM
    Comments:
    Hi, I just received a Sarcoidosis diagnosis two weeks ago. I was very relieved because i knew there was something wrong with me for at least four years and I could not pin point it. I had difficulties with my right eye; it was inflamed and the Dr I visited in a local clinic dismissed it as pink eye and gave me meds for a week - the eye remained pink (just the right eye) and I knew there was something wrong. Then one early morning around 3 am I felt my eye tearing up and I went to the bathroom and turned on the light and I was in severe pain - The light sensitivity was unbearable. I panicked but I did not call anyone I just felt it would go away - the next day the eye was better but I was freaked out. A week later a friend of mine suggested that i go to see an Opthamologist - which I did and he diagnosised my eye condition as being iritis (bilateral uveitis) and Wikipaedia helped me to find the link to Sarcoidosis after my Mom gave me an old article discussing iritis and I went online(iritis is a symptom of our disease) I have been taking ratio- prednisone drops for two weeks every hour and now every two hours 6 times a day. My eyes feel better but I have been feeling very alone. I am scared about my future and reading the posts on this site have not been consoling...I am keeping positive and I need to know if anyone has any ideas about foods that can help me to keep my feelings and symptoms under control. I have had night sweats, chills, dizziness, rapid weight loss, nausea and pain in my joints. I feel fine today but two days ago the lymph nodes in my throat were so inflamed I thought that my throat was closing up. I do not want to take steroids and I downloaded a manual by a lady named Danielle May - she is not an authority but she speaks about her personal experiences with the disease. I am going to try acupuncture since my closest friend has an auto-immune disease and she has been helped by this age-old practice. Thanks for listening we have to be here for each other -- I am scared but I remain positive and I will focus on what i do have and not on what I don't:)


    Name: Ruth Day
    Email_Address: dayir140@hotmail.com
    From: Fort McMurray AB Canada
    Found_Us_Via: Internet Search
    Date: Tuesday, June 14, 2011
    Time: 03:45 PM
    Comments:
    I was diagnosed in Yellowknife NT in 2007 with Sarcoidosis in my lung, I had problems with my joints and being tired and shortness of breath, while reading everyones messages I just had to let you know what I am doing to help myself and I hope this will help others. I was on prednisone for a short time and I stop taking them I found that it was not helping me so I started exercising all the time and eating properly and decided to buy some vitamins to help with my joints and being tired. I still do get tired at times but not as bad, I started taking Vitamin D, Monucare for Women and Omega 3 fish oil capsules for my joints and low daily dose asprin. I also have a Symbicort puffer that I take when I feel that I am having problems breathing,I found with those vitamins I can really manage my Sarcoid. Everytime I go to visit the Doctor they cannot get over how good I look and they keep telling me to keep on doing what I am doing. I cannot say that these vitamins will work for everyone, but right now it is working great for me. I can run a little, more than what I could do before and my main exercise is walking and using the eliptical. I am still looking for other vitamins that will take away my shortness of breath, maybe I won't find it but meanwhile I will continue to do what I am doing until it do not work for me anymore. I sure hope this will be a help to someone that have Sarcoidosis.


    Name: Jay W Callihan
    Email_Address: jaydubss@yahoo.com
    From: OH
    Found_Us_Via: Online Chat Group
    Date: Tuesday, June 14, 2011
    Time: 07:52 PM
    Comments:
    I was diagosed with pulmonary sarcoidosis in 1993 am an Army Hospital I had served in Desert Storm in Southwest Asia. I have been told that I have no symptoms but I have always had this cough at certain times that is gradually getting worse.  My PFTs seem normal but the cough is there and is sometimes so deep and persistent I throw out my lower back. Any comments?


    Name: Craig Wolf
    Email_Address: I craigwolf@bellsouth.net
    From: Leesburg Florida
    Found_Us_Via: Internet Search
    Date: Friday, June 24, 2011
    Time: 09:08 PM
    Comments:
    I was misdiagnosed with Cystic Fibroisis and I was treated for it for 2 years. After an Open Lung Biopsy, I was diagnosed with Sarcoidoisis. I was given 60mg of prednisone for 14 years. I had two seperate Gallium Scans where I was told the Prednisone was not working. I saw the head pulmonologist at Mt. Saini Hospital who discovered Sarcoidoisis.I had Cushings Syndrome because of the high doses of prednisone. I was put on Imuran and the sarcoidoisis went into remission. I now have Asthma, COPD and emphasema which is controlable with meds. My biggest fear is the sarcoidoisis will come back and I will be back on oxygen and have to lead a limited lifestyle again.


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    July 2011

    Name: Strueax
    Email_Address: strueax@gmail.com
    From: Oxnard
    Found_Us_Via: Internet Search
    Date: Sunday, July 03, 2011
    Time: 11:35 AM
    Comments:
    I was diagnosed with sarcoid in 1998. I am still on medications to control the illness. I still have to use inhalers and pain meds for joints. I am lucky to be able to work but come home exhausted and no energy on the weekends. Anyone else have the same problem?


    Name: Camille
    Email_Address: camillegerrald@yahoo.com
    From: Buffalo,NY
    Found_Us_Via: Support Group Database
    Date: Saturday, July 09, 2011
    Time: 09:22 PM
    Comments:
    Hello my name is Camille 42 yrs old after being told I had Lypmphoma,I find out on Feb 14,2011 that I have Sarcoidosis,it's in the chest Lymphnodes,2 leasions on the liver,maybe kidney too;and I am Sleepy all the time I'm alway wanting to do something but never having the energy to do it. I have Joint pain all the time mainly on my right sidefrom my neck to my foot,that pain has been on and off for the past 20 yrs,i alway though it happened at work,but I'm learning now it most likly was Sarcoid the whole time.Like most Sarcoid Ppl I don't look sick and truth be told i don't feel sick,but sometimes the pain get's to me,I'm not on any med's as of yet,beside a Motrin and Loratab here n there.1 thing I have noticed is I'm big time depressed b/c I want to do so much but I'm always tierd.Any ways I'm around feel free to e-mail I would love to chat with Ppl like me


    Name: Kenneth Dawan
    Email_Address: dawancommdevelopment@comcast.net
    From: Houston Texas
    Found_Us_Via: Linked Site
    Date: Tuesday, July 19, 2011
    Time: 12:06 AM
    Comments:
    Question; How many stages of scars are their ?


    Name: Martha Neeley
    Email_Address: Maspikes49@yahoo.com
    From: Texas
    Found_Us_Via: Local Support Group
    Date: Thursday, July 28, 2011
    Time: 07:10 AM
    Comments:
    I am looking for a NEUROSARCOIDOSIS docter in Texas


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    August 2011

    Name: rachelleen mars
    Email_Address: mars.rachel@ymail.com
    From: cape town south africa
    Found_Us_Via: (please select from list)
    Date: Wednesday, August 03, 2011
    Time: 10:02 AM
    Comments:
    hi. my name is rachelleen mars. im from cape town , south africa. i was diagnose about six years ago with sarcoids. i had it in my nose,on my right eye lid,lungs and now in my wrist and fingers. ive been on prednisone for the whole time until last november when my docters stop treatment. now my wrist and fingers is starting to pain again. at times it feels like arthiritis. no ane understands what im going through and think that im imagining it. im going back to docters for a checkup this month and is afraid of going back on the prednisone as it made me pick up alot of weight. is there any other treatment that i can take??

     

     

     

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