January 2010 Message Archive



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January 2010

S.O.S Wishes Everyone A

Name: Jeanette
Email_Address: jlhk1985@hotmail.com
From: VA
Found_Us_Via: Internet Search
Date: Friday, January 01, 2010
Time: 04:37 AM
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
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
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
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
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
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
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
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
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
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

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