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    top

    January 2009

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

    Name: L.ouesta
    Email_Address: louesta@hotmail.com
    From: Brooklyn New York
    Found_Us_Via: (please select from list)
    Date: Thursday, January 01, 2009
    Time: 01:34 PM
    Comments:
    Hello everyone, I have been living with Sarcoidosis for the past six years. In the beginning I had bells palsy and after that I developed a rash on my face, in the corners of my eyes and my nose, which have since become worse. I also have sarcoid in my eyes, I am now blind in my right eye. My doctors have tried everything and the only thing that seem to help is prednisone. My joints hurt so much sometimes I can't walk because of my hip. I get up ever morning and live each day because I can't give up, I have too much to live for. I have three beautiful children who needs me, so I can't give up, with every breath I fight this, whether I am in pain or not.


    Name: Gail Watson
    Email_Address: eyssogreen@aol.com
    From: Sacto. ca
    Found_Us_Via: Internet Search
    Date: Sunday, January 04, 2009
    Time: 09:37 PM
    Comments:
    I have Neurosarcoidosis, Diabetes, and reg. sarcoidosis. I also have a right upper thigh that goes from totally without feeling, to hot or cold flash feelings, or feelings of stabbing pain, or like bees are stinging me. I have been expecting an eruption as I thought it was Shingles, but so far, the condition is chronic, (about a month or more) and it doesn't seem to be letting up a bit. I have been putting a pain relief (arthritis type rub) on it, and heat which keeps it from making me scream....lol, but it isn't an answer. Is it a common condition? Is it neuropathy??? WHAT IS IT? Thank you, Gail from sacto. Ca.


    Name: BJ in Hong Kong
    Email_Address: bwjackson@hotmail.com
    From: Hong Kong
    Found_Us_Via: Internet Search
    Date: Friday, January 09, 2009
    Time: 07:51 PM
    Comments:
    Should I undergo treatment. 37yo white male, just diagnosed with Stage 3 pulmonary sarcoidosis. No symptoms, and lung function is fine. Am in Hong Kong, where incidence is low, and my specialist has little, if any, direct experience, but he recommends steriod treatment. Am obviously concerned about side-effects of steriods. Spoke to a friend who is an oncologist in New York and he spoke to someone who is very experienced in the treatment of sarcoidosis who advises to not treat based on my lack of symptoms and normal lung function. Interested in views and advice. Thanks.


    Name: Helen Laing
    Email_Address: h.laing@att.net
    From: Cincinnati, Ohio
    Found_Us_Via: Internet Search
    Date: Saturday, January 10, 2009
    Time: 07:16 AM
    Comments:
    My husband was diagnosed with sarcoidosis in 1999 after months of feeling ill, sweats, breathing problems, extreme fatique. He was on steroids, gained tons of weight, then on methaltrixate until 2003 when the doctor said he was in remission. Fast forward to January of 2008 - had catscan because of blood in urine (we still don't know where that is coming from after multitude of tests) - showed bone lesions all over the body. Sarcoid doctor said that sarcoid doesn't do this. After going to the emergency room in October of 2008, they tested him for multiple myeloma, bone cancer, etc. They now have said he has skeletal sarcoidosis which occurs in less than 1% of patients. It is over his entire body (including brain) - has short-term memory loss but is on methaltrixate again and it seems to be helping. Has anyone else had skeletal sarcoidosis that can help? We switched doctors and the new one seems to be staying on top of everything but has anyone else had the memory loss?


    Name: David Bryant
    Email_Address: d_w_b73@yahoo.com
    From: El Dorado,KS
    Found_Us_Via: Linked Site
    Date: Monday, January 12, 2009
    Time: 06:26 PM
    Comments:
    I was diagnosed with sarcoidosis, I was wondering that once you are diagnosed with type 1, how long is the time frame usually before you reach the type 2. What factors increase this? I have an old x-ray that looks identical to the one they just took and justified the ct scan for. If both xrays look the same, would it be safe to say I probably had sarcoidosis 4 years ago too. It just was not caught and did not get diagnosed because that was not what they were looking for, they were looking for broke ribs then instead of sarcoidosis.


    Name: Carlotta McCormick
    Email_Address: irisnutt@yahoo.com
    From: Virginia
    Found_Us_Via: Linked Site
    Date: Thursday, January 15, 2009
    Time: 10:28 AM
    Comments:
    Hi! I was diagnosed with pulmonary sarcoidosis in October 2008, after being sick since June 2008. I had the constant cough, aches, etc., and was diagnosed with strep, bronchitis, colds, etc., and went through alot of meds. I started having allergic reactions to all of my meds, including cough medicines, and then one day I got the butterfly rash on my face. My GP started talking about lupus, but referred me to a pulmonologist while waiting for the blood test results. The pulmonologist ran some CT scans, and came back with either lymphoma or sarcoid. He performed the bronchoscopy and punched out to my lymph nodes to do biopsies, because they were 6 times their normal size (eggs instead of beans). I had most of the symptoms of sarcoid, including difficulty breathing, pressure in chest (like pleurisy), butterfly rash, wheezing. They put me on 60mg of prednisone for 3 months, and I got almost every side effect known. Doc said it was better to take the pred than some of the other drugs, less side effects. I had swelling, movement of fat deposits (to throat and back of neck), thin skin, blood break-through to just under skin, 2 days of flying high with no sleep, and then crashing to recuperate, etc. Finally another CT scan showed that the "episode" was over, and they started bring me off of the pred slowly. I told the pulm about my nosebleeds--3-4 each day, and he found out that I had impacted sinusitis, symptoms covered by the pred. He gave me a strong antibiotic which has cleared most of the virus. HOWEVER, I still have many of the symptoms of other types of sarcoid, but can't get anyone to believe me. I have memory loss (truly, I can't remember anything anyone tells me, much less what I need from the store), my knees/back/bones ache to the point I can barely walk at night, my ears sometimes ring and go shut alot, my sinuses are still problematic, and I still have the ongoing cough. Also, before I was diagnosed with sarcoid, I had major eye problems and ended up with contacts/glasses. I had eye surgery 5 years ago, and still had perfect vision until January last year when it seems to be disappearing quickly. The eye doc thought I would need reading glasses because I'm 45 and he expected it. Imagine his surprise when it was my distance vision that was going away quickly. I developed alot of floaters, flashes of light, and seeing dark spots move out of the corner of my eyes that just weren't there. None of my docs think I have sarcoid anywhere else--just lungs. Does the cough ever go away? I've gotten used to it for the most part, but it's driving my husband crazy. He says it hurts his ears when I cough. How can the episode be better, but the symptoms still be here? I still get the butterfly rash on and off, and each time it shows up my face peels constantly as if sunburned. DOES IT GET BETTER?


    Name: Stephanie
    Email_Address: stephanie_akers2000@yahoo.com
    From: Pecks Mill , WV
    Found_Us_Via: Support Group Database
    Date: Thursday, January 15, 2009
    Time: 03:51 PM
    Comments:
    I am a 30 yr old who was recently diagnosed with sarcoidosis. Just really looking for any help as far as what to expect or how others were diagnosed. My diagnosis has been little over a year coming. It started with a pulmonary embolism with bronchitis and pneumonia. A year later I was still having problems and it progressed with chest pain and shortness of breath and I finally broke down and went to the dr, and was diagnosed with plurosy(questionable spelling). After following up with my family dr, he did a chst x ray and found "spots" he sent me to a pulmonoligist and I had a CT and a Broch with biopsies, and all the slides came back positive for sarcoidosis,, he has started prednisone treatment and I guess question is what is next?


    Name: G.Parrish
    Email_Address: parrishg@mdainc.com
    From: Atlanta
    Found_Us_Via: Internet Search
    Date: Saturday, January 17, 2009
    Time: 11:56 AM
    Comments:
    I was diagnosed with sarcoid so long ago I don't even remember. I was diagnosed by a Retina Specialist and later confirm by Pulmonologists. I had the dry cough that lingered on forever but I am not sure what other symptoms I might have had except in my eyes. The swelling in my eyes would get very bad at times and I would take steroid shots in the eyes to keep it under control. I do have huge floaters but currently the sarcoid is inactive in my eyes. The complications I am dealing with is this: I also have kidney cancer. They removed my kidney but it spread to my bones and my lung.They really can't tell, in my lung, where the sarcoid ends and the cancer begins. I have had rounds of chemo but it doens't seemed to have helped. What I need to know is how can the docs tell if it helped if they can seperate the cancer from the sarcoid? How do they even know how big the tunmor is? IS THERE ANYONE OUT THERE THAT HAS PULMONARY SARCOID AND CANCER?


    Name: SusanSIL
    Email_Address: tedsmom65@aol.com
    From: Illinois
    Found_Us_Via: Internet Search
    Date: Saturday, January 17, 2009
    Time: 03:48 PM
    Comments:
    In late 2005, it was discovered one lung with many granulomas & had open lung biopsy performed with inconclusive results. Regular CT scans have been performed and now have granulomas in both lungs with multiple densities identified. My pulm. dr. has pre-diagnosed me with sarcoidosis. In late 2008, I had a CT & MRI of brain done and results show multiple white matter lesions which are associated with MS. I've seen a MS specialist and would have diagnosed me with MS until I mentioned sarcoid to him. He scheduled more blood tests and a MRI of neck & spine and suggested a spinal tap, which i have scheduled for next week. In the meantime, I was able to make an appointment with a sarcoid specialist at the Univ of Chicago Hospital. My current dilemma is whether it's necessary to have the spinal tap performed before I see the specialist, if at all. I'm pretty sure, from what I've read, the spinal tap cannot conclusively diagnosis either. Do any of you have input on the spinal tap test? Both diseases are very similiar but I don't possess a lot of the symptoms for sarcoid except the achy, flu-like symptoms and fatique at end of day. Otherwise, breathing feels normal (and improved since I've cut smoking back using Chantix from 1 pack/day to 3 cigs a day). Any advice, anyone? thank you


    Name: Sonya Jones
    Email_Address: s_jones71_07@sbcglobal.net
    From: Indianapolis
    Found_Us_Via: Internet Search
    Date: Monday, January 19, 2009
    Time: 07:41 PM
    Comments:
    I was diagnosed with sarcoid November 2004. I was immediately given Prednisone, which gave me several unwanted side effects. I was told my pulmonary physician that I needed to continue taken the steroids and if I had any problems swallowing to come back and see him. I stopped taking the steroids and as of this year I had a very bad flare up. I lost my balance and now have trouble hearing. I have constant joint aches. I went back to the doctor and was placed back on steroids at 40 mg a day. I also take prenatal vitamins, Klor-Con for my low potassium, lisinopril for high blood pressure and Furosemide which is a water pill. The doctor took me off work indefinitely. I wanted to know if my balance will come back? I walk like I'm just learning. It is very depressing. I have worked since I was 14. I am 37 now and don't have the finances to miss any more work. I was given an MRI last week and will receive the results soon. The doctor states that it can be neurosarcoidosis. Is there any other type of medication that can be given to me? The steroids make me fell worse and it doesn't help the pain.


    Name: David Bryant
    Email_Address: d_w_b73@yahoo.com
    From: El Dorado,KS
    Found_Us_Via: Internet Search
    Date: Monday, January 19, 2009
    Time: 09:06 PM
    Comments:
    As I said earlier, I was diagnosed with Sarcoidosis just this last week. I have started taking 60mg of Predisone and it seems to have relaxed the cough for me. It too has eased my breathing problems some. I still have the cracking sounds from time to time and some gasping. I am said to have type one Sar. but I do really believe I am at least type two from my view. I live in Kansas and am in search of any Specialist Dr.s in the area if anyone would know please help. I am useing the VA Medical Care and they are really pretty limited to their knowledge of the condition it seems.

    *Admin. Message-
    Please try our
    Dr. Database: The
    Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid specialists in your area.


    Name: Steven Clark
    Email_Address: sclark@scstarnet.com
    From: Utah
    Found_Us_Via: Internet Search
    Date: Wednesday, January 21, 2009
    Time: 09:00 PM
    Comments:
    Hi, my name is Steven. I was just diagnosed with sarcoidosis. I had a cough for about three months. I am 45 years old. Doctors did a chest xray then ct scan then lung biopsy. I was beside myself. Till the biopsy came back I was beside myself because they said I could have cancer. About 4 days later they told me it was sarcoidosis. Now I have a nice hole in my neck and swollen lymph nodes and nodules in my lungs. My lungs have always been good. I have had gout flare ups for about 15 years. could this be part of the same? I have never even heard of this disease. I wonder what's next. Does anybody know if this is something I could have already had for a while. I have read quite a bit on the internet. I have been sent to a pulmonologist tomorrow. God bless.


    Name: James Burke
    Email_Address: ds842@aol.com
    From: El Paso
    Found_Us_Via: Internet Search
    Date: Thursday, January 22, 2009
    Time: 06:16 PM
    Comments:
    I was diagnosed with Sarcoid in January 2009, since May 08, I started going to many specialists cause of all my ailments. My saliva ducts stopped working, eye inflamation, loss of memory, enlarged lymph nodes, headaches, chills, fatigue, dizziness, and body aches. I wish I could say I just got this, but believe I have had this in a lesser degree for past thirty years as I have been hospitalized for unexplained fevers and swollen legs.My RA doctor has put me on Hydroxychloroquinne 200mg twice a day in July08, which really for malaria, which I don't have, as he thought I had some type of Autoimmune disease. But it does seem to be slowly working, my enlarged lymph nodes are shrinking 30% in six months and do have less chills. He also has me on Co Q-10 and Omega 3 Fish Oil, the chest pains have almost gone away, and overall, some days I do feel I have more energy. But I do have some days where I spend all day in bed.


    Name: Chris Piccott
    Email_Address: chrispiccott@hotmail.com
    From: New Brunswick, Canada
    Found_Us_Via: Internet Search
    Date: Thursday, January 22, 2009
    Time: 09:11 PM
    Comments:
    Hi: Just before having heart work done in the early 80's, the chest x-rays showed TB or Sarcoidosis, as it turned out it was Sarcoidosis. Throughout the years I've had aches and pains in which couldn't really be explained, but were treated as individual items. Two weeks ago I was reading some info my wife found on the internet regarding Sarcoidosis and its symptoms. I then went to my doctor and he said some things may be a result of this disease, and the rest were just coincidence. Funny enough, a day after all this I finally found a seventy two year old lady that used to run help groups for Sarcoidosis people here in Saint John, new Brunswick, Canada, and we reviewed all my aches and pains....eighteen problems I am going through she said were related to this evil disease. Just a few of them: left arm goes completely numb, migraines, bad sore knees, heart palpitations, racing heart, skipped beats, out of breath after just two short flights of stairs, takes sometimes ten minutes to catch breath, red patches on face area, dry cough, always clearing throat after eating (like there is something there), burning feet, dry eyes, lights and sun are to bright (almost hurts), Irritable Bowel Syndrome, diagnosed with asthma (but it is probably Sarcoidosis), did a lung function test last year, lung capacity down to 74%, depression, and fatigue after something physical. Family is so important to my wellness state. Life goes on, and on, and on, and on, god when does it stop. Good luck everyone. If the doctors don't know, then it's up to us to educate them I guess. Cheers!


    Name: Desi Hand
    Email_Address: dhand07@aol.com
    From: England
    Found_Us_Via: Internet Search
    Date: Friday, January 23, 2009
    Time: 09:40 AM
    Comments:
    I was diagnosed with Sarcoidosis in August 06 after a biopsey showed I had the disease and not Lymphoma as I had been previously told. I had no symptoms at all. I had gone to my doctor in June 06 as I had felt enlarged lymph nodes on one side of my neck. CT scan show ed enlarged lymph nodes either side of my wind pipe. I was told by the consultant that I didn't need any medication. I started to get night sweats and was very aggitated all the time. I felt the nodes in my neck increased. In April 08 I was feeling great with no problems I went to see the consultant and he did a CT scan. To my suprise the Sarcoidosis had spread to both lungs. Lots of changes in 2 years he said. I still had above average lung function test results! I was put onto 60mg Prednisalone which was reduced and reduced. In August I was put onto Methotrexate this was gradually increased to 15mg one day a week and 7.5mg of Prednisalone daily. I still feel well with no side effects and I have noticed I cant feel the nodes in my neck anymore although that side of my neck is still visibly thicker than the other side but no one notices except me. I am on this medication at this level until October 2009. I have regular blood tests which have been fine. Has anyone else had this treatment and what was the outcome? I believe my Sarcoidosis was brought on by stress. I believe I have to keep very fit to keep as healthy as I can. I wish that the readers of this comment a positive future.


    Name: Tamie OConnor
    Email_Address: tamie50@gmail.com
    From: Canada
    Found_Us_Via: Internet Search
    Date: Monday, January 26, 2009
    Time: 07:46 AM
    Comments:
    I was told I had Sarcoidosis about 4 months ago, after having a ct scan done for my sinuses. One week later I had a biopsy done on my lymph nodes, which came back positive. I am having pain in my joints with sharp pain in muscles and my nose and in around my eyes. The fatigue is the worst for me, I found I am sleeping like 18 hours a day. I had a bad flu last April that just wouldn't go away. With it I had chills, night sweats, fatigue. My voice comes and goes, it can go for a few hours or for a couple of days. It seems as if it is getting worse, my specialist doesn't want to give me any meds but I am having a hard time just being able to the things I would normally do. I had to leave my work. I had never heard of Sarcoidosis, so now I try to find out if there is anything homeopathic which can be done.


    Name: Steve Johnson
    Email_Address: stevejai2002@yahoo.com
    From: Huntington WV
    Found_Us_Via: Internet Search
    Date: Monday, January 26, 2009
    Time: 06:17 PM
    Comments:
    I was diagnosed with Sarcoid in 1985. The involvement was in my liver and lungs after a year course of prednisone it went into remission. I have been having issues with extreme swelling and pain in my hands and fingers over the last month. I would usually take a NSAID to reduce the swelling and pain but since I was recently diagnosed with CKD in Nov. I can’t take those type of medications anymore. Today I went to the emergency room and the Dr. there told me that my sedimentation rate was 54 and he thinks that there may be more sarcoid involvement. Has anyone had these type of issues with your experiences?


    Name: Jane/of/Monroe
    Email_Address: JaneOmonroe@aol.com
    From: Fl
    Found_Us_Via: Internet Search
    Date: Tuesday, January 27, 2009
    Time: 07:39 PM
    Comments:
    I have a question. I have been diagnosed with sarcoidosis for two years now and am about to go on my third round of Prednisone (each has been about six mos. apart). Each round starts at 60mgm, decreasing the dose every four days until finished. I was told this time I may have to stay on a low dose. I know each case responds differently, but what is a common maintenance dose? I find the high dose very disagreeable especially the insomnia and hair loss. Is it reasonable to give the maintenance dose a try before asking to try a different med?


    Name: shelagh
    Email_Address: smstrs@aol.com
    From: yorkshire, england
    Found_Us_Via: Internet Search
    Date: Wednesday, January 28, 2009
    Time: 08:15 AM
    Comments:
    I was diagnosed with sarcoid in 1992; had problems with breathing, joint pains, fatigue etc etc. Over the years I have had several flare-ups, but have come through them all more or less in one piece. Recently however, I have been feeling very odd - flu-ey and under the weather generally, but what is worrying me greatly is that I am shivering all of the time. I am not cold, it is just as though I am 'coming down' with something that doesn't materialize. Does this sound like any sarcoid symptoms experienced by anyone else? It is very unpleasant, though obviously it is not painful or debilitating. I would just like to know what is causing it.


    Name: Gloria Parrish
    Email_Address: parrishg@mdainc.com
    From: Georgia
    Found_Us_Via: Internet Search
    Date: Wednesday, January 28, 2009
    Time: 03:25 PM
    Comments:
    Are there others out there who have had more symptoms related to your vision than those lung related?



    top

    February 2009

    Name: Linda K. Byron
    Email_Address: lkbyron@verizon.net
    From: Virginia
    Found_Us_Via: Internet Search
    Date: Sunday, February 01, 2009
    Time: 01:29 PM
    Comments:
    I have been told that I might have sarcoidososis and the pulmanary Dr. wants me to have a skin biopsy. My symptoms occured in 2005 and I went to the hospital and was told I had Transverse Myelitis and then MS. Now they found nodule in each lung. I've had psoriasis, dermatitis, low thyroid and feel pain in right side under breast. I walk with a cane due to muscle weakness. I'm so tired all the time, depressed, have joint pain and don't know what to do. I sometimes look at the cross and see Jesus suffer so why should I complain.


    Name: Doreen Scott
    Email_Address: doreenscott125@comcast.net
    From: Florida
    Found_Us_Via: Online Support Group
    Date: Tuesday, February 03, 2009
    Time: 05:29 PM
    Comments:
    I was diagnosed with Sarcoidosis in January 2007 but before that I was having symptoms and not know what it was. I was on prednisone for one year and everything was fine. Now I am anemia, lost weight and having to get procrit theraphy My advise is to you all drink alot of fresh fruit juice, take multivitamins, also go to the herbal store tell them your problem and I am sure they will find something to make you feel better. This is what I did and it helps me with coughing and all the other symptoms that come along with Sarcoidosis. God Bless you all. Love Bye


    Name: Debbie Bassil
    Email_Address: ddbno@hotmail.com
    From: New Orleans
    Found_Us_Via: Internet Search
    Date: Tuesday, February 03, 2009
    Time: 09:17 PM
    Comments:
    My husband has sarcoid of the lungs for 6 years. He continues with Advair and prednisone. Does any one know if general anesthesia will exacerbate his symptoms? He may need cervical fusion. thank you in advance for any input.


    Name: Carla Bly
    Email_Address: carlably2007@yahoo.com
    From: Eldon, MO
    Found_Us_Via: Internet Search
    Date: Wednesday, February 04, 2009
    Time: 04:44 PM
    Comments:
    I am a 47yo white female diagnosed with sarcoidosis last May. Started with the shortness of breath, severe headaches, aches, etc. It has flared up alot but they don't think I need steroids, say the side effects are worse than the disease, so my question is...do we just suffer???? And is ANYONE looking into a cure??? I also get the rash on my face ALOT and I am just exhausted all the time. I guess I am just really relieved to find some of you who know how I feel.


    Name: James35
    Email_Address: jaybbowjay@yahoo.com
    From: Taylor,Mi
    Found_Us_Via: Internet Search
    Date: Thursday, February 05, 2009
    Time: 10:52 AM
    Comments:
    Hello I havent been actually diagnosed with sarcoidosis but have had symptoms such as swollen ankles, breathing and swollowing problems, small pinpoint ulcers on my shins, fatigue, night sweats sometimes, and recently back pain. I also have had kidneys ake of and on since about 2003. I link the sickness to possible exposure to asbestos while remodeling a house. I am married with 2 daughters. Me my wife and oldest daughter were exposed and my youngest daughter wasnt born yet. I have had to watch them with symptoms also. My older daughter has been very sick with swollen glands off and on, fatigue night sweats and more symptoms also. I have found that a healthy diet balanced with protein and moderate carbs helps alot. For me if I cut out junk food and stick to natural foods my symptoms decrease and almost vanish. Although it is verry hard to eat this way for me because my craving for sweets has increased tremendously the past few years.


    Name: Kevin C.
    Email_Address: kpconger@centurytel.net
    From: Wisconsin
    Found_Us_Via: Message Forum
    Date: Saturday, February 07, 2009
    Time: 05:15 PM
    Comments:
    I was diagnosed in 2006 and have been told that I am in remission. Although I still have all the symptoms that I always had from the fatigue to the body pain, to the sick feeling and swelling in my legs. I would like to here from others that have been told this and feel like nothing has changed. Also if anyone knows of a good Dr. in Wisconsin let me know cause there aren't any that seem to understand or want to understand what I'm telling them. If its not in there medical books then it must not be a problem.

    *Admin. Message-
    Please try our
    Dr. Database: The
    Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid specialists in your area.


    Name: Wendy Lykopoulos
    Email_Address: ARIANNA@aol.com
    From: Florida
    Found_Us_Via: Internet Search
    Date: Tuesday, February 10, 2009
    Time: 10:38 PM
    Comments:
    I was diagnosed with Sarcoid in 1989 with erythema nodosum and a lung biopsy. It resolved with high does of Motrin within 6 months. This past year (20) years later I was diagnosed with bilateral carpal tunnel and now have had left sciatic pain for the past 4 months. My ankles and feet are stiff in the morning and slowly loosen up after a couple hours of moving around. I feel like an 80 year old and I just turned 51 - there is no erythema and on my labs have been normal - could this still be Sarcoid related? Does any else have a similar story? Thanks Wendy


    Name: Tasha Kenon
    Email_Address: tashakenon@yahoo.com
    From: Mt. Olive, N.C.
    Found_Us_Via: Internet Search
    Date: Saturday, February 14, 2009
    Time: 12:49 AM
    Comments:
    I was diagnosed with sarcoid 6yrs ago and it was scary especially the fact, no one knows where it comes from or how it even started. Not knowing I would live to see my daughter first birthday was the scariest of all. People seem to think you're faking when you're in pain and think you'll get over it, I wish it was that simple. I've had problems with my eyes, sores in my head, joints aching and that's to list a few. I just thank God I'm alive and maybe one day I'll be able to get off Predisone for good. I've read alot of stories and my prayers go out to those who have it and those who have to see their love ones go through it. Just know you're not alone. May God bless each one of you.


    Name: TriciaW
    Email_Address: latward@gmail.com
    From: north Carolina
    Found_Us_Via: Internet Search
    Date: Friday, February 13, 2009
    Time: 04:31 PM
    Comments:
    In 2003 I went for sinus surgery and was diagnosed with sarcoidosis of the nasal passages. I have been having increasing joint pain and no energy. I am almost totally disabled Doctors have been treating with steroids which I do not tolerate well. Anybody have nasal sarcodosis. how are you being treated?


    Name: DFluellen
    Email_Address: dorothyfluellen@hotmail.com
    From: Korea
    Found_Us_Via: Internet Search
    Date: Thursday, February 19, 2009
    Time: 08:36 AM
    Comments:
    My husband was diagnosed with Sarocidosis in 1975 in Europe. We live with the disease for 30 year s together as man and wife until the sacoidosis got worst in 2002. My husband was diagnose as Stage 4 from his Radiogical test. I discovered that all of his eight brothers and three sisters had sarcodosis. My mother-law died of Ssarcoidosis/ pneumonia/Cancer in 1979. One sister-in-law died in 1985 of Sarcoidosis/Pneumonia and I recently lost another sister in-law to sarcoidoisis/lymphoma During the many years of marriage my husband developed skin rashes , sinutis , dry cough, skin lesions, joint aches, high cholesterol ,highly allergic to ants bits, high blood pressure, reddish or yellowish eyes , lost weight and head aches . My husband changed overnight and we divorced after thirty years. Sacoidosis had affected his brain. The disease robbed me of wonderful husband and a good friend. My ex-husband denies all sickness and live life dangerously.


    Name: Thomas Holcomb, Jr
    Email_Address: tomahawk1130@yahoo.com
    From: Rocky Face Ga.30740
    Found_Us_Via: Internet Search
    Date: Thursday, February 19, 2009
    Time: 05:45 PM
    Comments:
    Oh yes, my first try of alleve was Bell's Palsy, It lasted 6 months and ended a marraige. That was 8 yrs or so ago. I have used it a time or two and think I had speech impediments because of it. I tried it again last week and have a bad rash on my right jaw. This crap is dangerous



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    March 2009

    Name: Jenny Chandler
    Email_Address: jennydc55@yahoo.com
    From: North Carolina
    Found_Us_Via: Internet Search
    Date: Monday, March 02, 2009
    Time: 12:18 PM
    Comments:
    Hi! I was diagnosed with neurosarcoidosis in May of 2008. This is a rare form of sarcoidosis and I need to know more about it. If anyone else has this, please e-mail me so we can share info.


    Name: SHANNON KELLY
    Email_Address: bourbon915@yahoo.com
    From: connecticut
    Found_Us_Via: Internet Search
    Date: Thursday, March 05, 2009
    Time: 03:26 PM
    Comments:
    My father has been very sick for the past 10 years! He is going on 59. He has been disabled for the past 4 years. It started out as a type of facial palsy. He has been everywhere on the east coast and still is undiagnosed. It is definately not bells palsy. Few doctors have diagnosed him with Sarcoidosis, however others have said it is not. He is a 6 foot 5 inch 250 pound man that is no longer able to walk, lift or do any type of activities. We've found this to be due to extremely high lactic acid levels. Is anyone having this problem? He has been on steroids for the last 3 years. I am asking for any similar cases.
    Thanks


    Name: Joanne Hill
    Email_Address: jojosarah@hotmail.co.uk
    From: Coventry
    Found_Us_Via: Internet Search
    Date: Monday, March 09, 2009
    Time: 05:51 AM
    Comments:


    Name: Jana A. K.
    Email_Address: jakaram@att.net
    From: new jersey
    Found_Us_Via: Internet Search
    Date: Monday, March 09, 2009
    Time: 07:55 PM
    Comments:
    Doctors diagnosed me with Sarcoid in late 2008 after biopsies, ACE test, and a two week hospitalization where they ruled out everything else they could think of. ( I was there for persistent high fever, night sweats, nausea, etc.) they found sarcoid granulomas in a groin lymphnode and that they considered the sarcoid atypical, although I do not recall precisely why except that I did not have red lumps on my legs. If atypical or lymphnode granulomas are anything anyone has experience with, I'd appreciate thoughts on that as well. Can anyone comment as to whether they have found a physician who is a multi-system sarcoid specialist or are there just organ/system experts who focus on how the disease affects each organ/system? I see many doctors listed but no substantive criteria for evaluating their expertise? Has anyone been to Duke or UVA or any medical center that has a team of physicians who co-manage sarcoid patients? I am an older mother of three young children and I want to be around to raise them to maturity so I will greatly appreciate any and all thoughtful responses.


    Name: Lena R.
    Email_Address: sweetsbylena@yahoo.com
    From: Apopka, Fl
    Found_Us_Via: Internet Search
    Date: Friday, March 13, 2009
    Time: 08:32 PM
    Comments:
    Hi everyone, Its Lena again I haven't posted a message since August, 2008. Just wanted to give an update and ask a question. Well since January I have been having trouble with my stomach. The Doc don't seem to know what is wrong. However they do think that is possible that my sarcoidosis has found its way to my stomach. Boy o Boy, this really scares me. Well I have been scheduled for a endoscopy of my stomach. That is a scope that they will use to look inside my stomach to see if sarcoidosis is there of if it is something else. I am looking forward to finding out what is going on but I am terrified of what I might find out. Well I was wondering has anyone else been told that they have sarcoid in the stomach? If so what have they done for you? Or is there anything that they can do for you. My symptoms are A lot of pain in my stomach, feeling full and sick to my stomach. Also some days I have trouble moving my bowels. Some of you might say it sounds like irregular bowels syndrome, but I had a ultrasound and a CT and they did not see any signs of that. So please let me know what you think. Take care and God Bless, Lena


    Name: daryl purdy
    Email_Address: daryl_purdy@yahoo.com
    From: Michigan
    Found_Us_Via: Internet Search
    Date: Monday, March 16, 2009
    Time: 06:57 PM
    Comments:
    I have been diagnosed with sarcoid in July 08. confirmed by biopsy of lymph node. I started prednisone treatment but could not tolerate and was taken off. I went to see a pulminoligist and took a lung function test it was abnormal for lung capacity. he is recommending no treatment at this time but is keeping an eye on it. I see him again in April I am currently having chest pain and my knees and muscle ache along with fatigue and dizziness. My Dr has been trying to help but nothing seems to be helping any advice or support anyone can offer would be greatly appreciated


    Name: naresh sharma
    Email_Address: nareshsudha1@yahoo.com
    From: Panchkula, india
    Found_Us_Via: Internet Search
    Date: Tuesday, March 24, 2009
    Time: 01:34 AM
    Comments:
    My wife was diagnosed of sarcoidosis which affected her spleen n liver. she was loosing her weight and couldn't eat anything. Finally, with steroids she started to get her strength back. slowly, the medication was stopped n she was declared fit. Now, after one year, she is back in bad health. her coughing is not going away. recently, she vomited blood with lots of thick phlegm. docs said nothing to worry about. could she again be having sarcoids? she is so scared to go to docs that she wants homeopathy medication. can anyone suggest me, if homeopathy is good enough.


    Name: Tamie O'Connor
    Email_Address: tamie50@gmail.com
    From: Canada
    Found_Us_Via: Internet Search
    Date: Saturday, March 21, 2009
    Time: 03:54 AM
    Comments:
    I was told I have Saracoidosis in Nov.08. It is in my lymph nodes, but I have pain in my hands and feet. The past month a lump appear on the front of my lower leg. I am also having pain in my face around my eyes, nose and ear. My eyes are light sensitive. My doctor has not given me anything for it, wants to see if it go away on it's own. What I am really concerned about is my eyes. My family doctor has made an appointment to see an eye specialist but it is several months away. Has anyone found anything holistic that could help with this disease.


    Name: sheila white
    Email_Address: slwhite_74@yahoo.com
    From: Madison WV
    Found_Us_Via: Internet Search
    Date: Tuesday, March 24, 2009
    Time: 07:42 PM
    Comments:
    I was diagnosed in Nov. 2006 and going down up and up in size all the time.


    Name: Debi Bailey
    Email_Address: baileydeb@aol.com
    From: Alabama
    Found_Us_Via: Online Support Group
    Date: Saturday, March 28, 2009
    Time: 06:47 PM
    Comments:
    I was diagnosed with Sarcoidosis in May 2007 after seeing about 15 doctors since March 2007 including 3 emergency room visits. I had severe pain in right side from shoulder to groin, constant low grade fever, loss of appetite, nausea, extreme fatigue, anemia, and brain fog. My last ER visit a lady doctor said it was in my head, I said Lady do you think pain, fever, and throwing up is in my head?? Wow, was she a doctor, don't think so... I reported her but do you think they did anything. NOT, MY BAD I was a multi-tasking teacher juggling 5 or more tasks in a very demanding and stressful school setting with a principal witch from the north, I live in the south. I finally found a sarcoid specialist in the area but he was a pulmonary specialist. It is not in my lungs yet. He hardly wanted to look at me or treat me but was the only one that knew anything about sarcoid. It is in my soft connective tissues and some lymph nodes. I found some lumps and he biopsied proving sarcoid. He sent me to Emory U in Atlanta but not much help there just agreed with diagnosis. He tried predisone and then went to methotrexate. I went to eating more natural and organic foods when possible and lots of water. I finally went in remission about January 2008 and returned to a full-time teaching job in a private school, easier and less stressful. My symptoms have returned since February 2009 and becoming worse. I have severe pain on right side from neck down, extreme fatigue, constant low-grade fever, lots of brain fog, and less multi-tasking ability. I was laid off and now working part-time in Adult Education. This is even too hard sometimes. I am now going to Mayo Clinic in Jacksonville, Florida for treatment options. I have more lumps that are now hurting when touched and constantly, different sizes and shapes. My local doctor has finally given me an antibiotic to try and plaquenill along with the methotrexate. I take about 5 pain pills of tramadol and ibuprofen a day but try not to. I do not have much of an appetite but make myself eat frequent balanced meals and snacks. Has anyone had this type of Sarcoid in the tissues? Has anyone gone to a Mayo Clinic and had good results? It is frustrating when doctors will only look at one part of the body and not connect the other parts to the condition or treatment. We have got to be proactive and researchers ourselves to find what will work best for our bodies with the support of our Father in Heaven and his son Christ Jesus. Don't ever give up on this cause and keep fighting to win.God bless us in well doing and be positively mad about sarcoid.Debi


    Name: Carmen W
    Email_Address: carmenrw@gmail.com
    From: Annapolis MD
    Found_Us_Via: Doctor Database
    Date: Monday, March 30, 2009
    Time: 08:39 PM
    Comments:
    My 57 yr old husband has been living with sarcoidosis for many years. I'm trying to find a good physician in the Baltimore Washington area. Does anyone have any suggestions?

    *Admin. Message-
    Please try our
    Dr. Database: The
    Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid specialists in your area.



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    April 2009

    Name: DeannaBennette
    Email_Address: deannasep11@aol.com
    From: OHIO
    Found_Us_Via: Internet Search
    Date: Thursday, April 02, 2009
    Time: 08:49 AM
    Comments:
    Hi. My name is Deanna and about 4 years ago, my body started doing strange things. Muscle type pains in my neck, gallbladder troubles, pains in my left abdominal side, a horrible dry cough ( they said was larngyopharnygeal reflux), major headaches and head pain, an MRI of the brain with two lesions ( they thought would be MS ), and an ACE serum test that said my level was at a 71. Okay, so now I am like having massive pain near my spleen and of course I am thinking I have LYMPHOMA or MYELOMA. But the more I read about Sarcoid, the more I am thinking it might be that? I was told that with Sarcoid however, that you do not feel pain in your spleen area.From other experiences, does anyone think that Sarcoid is a possibility? When they did do my Spinal tap, they said they founds something in my blood. I went for an IgG blood test, but again it was negative. I am sick of Drs, different meds, and just the NOT knowing. Any advice would be appreciated.Thanks.


    Name: Linda T.
    Email_Address: mammalinda6060@comcast.net
    From: maryland
    Found_Us_Via: Internet Search
    Date: Saturday, April 04, 2009
    Time: 07:03 PM
    Comments:
    Hello everyone I visit this site sometimes when I need to vent. I've had Sarcoid about 3 years now. I am suppose to be in remission, which I don't understand because I still have some of the symptoms. Pain, Pain, and more pain the pain never goes completely away. I have Sarcoid mostly in my lungs, I'm finding it harder to breath. I on Advair and an inhaler when needed. I develop weak muscles in my legs, my feet tingle a lot. I have diabetes too which was discovered around the same time the Sarcoid. The tingle in my feet is not cause by the Sarcoid I went to a Sugar doctor (forgot what you call diabetic doctors) and he said that the tingle in my hands and feet are not cause by diabetes. I have about seven doctors, heart, arthritis, asthma and breathing problems, eye specialist, foot doctor and my primary doctor. I'm on the Lyric and Hydroxychlorquine genic or Plaquenil 200 mg. this helps some but the pain in my legs feet snd shoulder is still always there. I am walk with a cane now because my balance is off and I need the support because my legs feel weak, my feet are sore I also have bone spurs. If this is remission I truly do not understand I feel worse not that I did when I was first diagnosed. I have one doctor who truly listen to me and that a blessing, but honestly I am tired of all doctors and all the test because I don't feel much better.


    Name: Brian Nelson
    Email_Address: garrickthewise@yahoo.com
    From: San Francisco,CA
    Found_Us_Via: Internet Search
    Date: Thursday, April 09, 2009
    Time: 03:11 AM
    Comments:
    I'm 44 years old and I suffered from TB like symptoms for months before being diagnosed with sarcoidosis of the lungs. During this period I began to lose my appetite and I lost weight very rapidly. One night I went to bed feeling like I was on death's door, and woke up feeling better than I had in ten years. My symptoms had literally disappeared overnight. And I don't know if this is a curse or not, but a year later, I still don't have much of an appetite. For about fifteen years, My weight had been 185 lbs, plus or minus 5 lbs. I now weigh about 142 lbs, and I'm still losing weight. I receive my medical care through the veterans administration and neither my chest doctor nor my primary care physician shows any concern about this.


    Name: Brenda U
    Email_Address: bfu@comcast.net
    From: TN
    Found_Us_Via: Message Forum
    Date: Thursday, April 16, 2009
    Time: 08:06 PM
    Comments:
    I have posted here before and continue to check back week to week in hopes of finding a message from someone who has finally found a cure or a doctor who is familiar with this. I was diagnosed in '05 after being being ill for about a year with weight loss, pain, nausea and even being diagnosed with glaucoma. I was told I had lymphona til a biopsy confirmed sarcoid. To make a long story short, I have experienced almost each symptom that has been mentioned here. The high dose of prednisone I took for over a year did nothing but nearly kill me mentally and physically. It did not help at all. I have since changed doctors and my new pulmonologist is from FL and supposedly an expert with this condition. However, he says I am in remission but the only symptoms I don't have now is the weight loss and severe dry cough. This last year has brought me severe pain in my feet with numbness. I've had every test imaginable for this and nothing shows up. Right now my right arm and shoulder hurt so bad I had to come home from work and it even hurts worse when I lay down. Once again, the doctors all tell me that none of this is related to sarcoid. I've had the best winter in years with no colds, bronchitis etc which is a blessing. My opthomolgist has insisted from day one the glaucoma has nothing to do with sarc. I am struggling daily just like the rest of you in trying to get by with this without the doctors because of the lack of answers they have. I have come to the conclusion that sarcoidosis is just a name the doctors have given to a condition because they don't know what it is or have a clue as to why one gets it or how to properly treat it. I've only known one person personally who had it for 10 years and she passed away from problems that arose from the sarcoid. Of course everyone has heard of Bernie Mac and Reggie White and I thought surely their passing would trigger a concern to find answers. My friend who passed away from complications caused by this and Reggie and Bernie are African Americans. I'm Caucasian and was 55 years old when diagnosed. I had been extremely healthy til this time. I haven't heard of another person with this in Chattanooga, TN although my doctors continue to tell me they have many patients with this. I've found this message forum to be the most helpful and informative avenue of information. Even when I've tried to tell the doctors of all these same symptoms we all have mentioned it's as if I'm talking to a wall. My doctors will not admit any of the aches and pains I have are related to sarcoidosis and I don't think they will ever be convinced otherwise. I wish you all good luck with easier pain-free days.


    Name: anneliz
    Email_Address: princessann51@yahoo.com
    From: Clearwater
    Found_Us_Via: Message Forum
    Date: Friday, April 17, 2009
    Time: 09:32 AM
    Comments:
    I have had sarcoid for 28 years. I really did not have major problems until about 3 years ago when I started having sinus problems. The ENT sent me to an internist who ordered all kinds of tests and actually other then scarring in the lungs everything else was good. Then within the year, I started loosing weight and was very tired. My blood work was crazy too. I had almost no white blood cells. At that point my internist, who is very good, realized that he did not know enough about sarcoid so he contacted a rhemetologist who had experience with sarcoid. She has 6 patients with the disease. She ordered all kinds of blood work, ct scans and xrays. My ACE level was 143 at the time and I was on the verge of having lupus. She put me on prednisone with the understanding that she would wean me off within 6 months and I would try Remicaide which is an infusion given every 6 to 8 weeks usually to RA patients. The prednisone worked well and brought all my numbers into the normal range. I have had 4 infusions of remicaide and my numbers continue to be great. My advise to any of you would be to find a specialist who works with other sarcoid patients and to try the remicaide treatment. Now you must be tested to find out if you have arthritus because that is the only way most health insurers will pay. I have lived with this disease for half my life and I understand the suffering most go through. As a side, 2 of my first cousins have the disease although it has affected them in the eyes and the brain. There is definitely an inherited tendency to this disease. Contact me if I can be of help or answer any questions.


    Name: Tony Dolan
    Email_Address: tonyd@exam9.com
    From: Dublin, Ireland
    Found_Us_Via: Internet Search
    Date: Thursday, April 23, 2009
    Time: 06:24 AM
    Comments:
    I think most of us have systemic sarcoidosis which effects joints, muscles, lungs, head, nose, knees, sleep sensory perception etc. My condition aggravated so bad after I came off one year of Prednisone that I was damned if I would ever go near the stuff again. I tried minocycline which seemed to improve my condition but I found myself with a permanent headache. I came off everything and built myself a small japanese type garden and started Tai Chi. This worked in so far as I recovered a sense of well being that had disappeared completely for nearly four years. My doctor told me I was kidding myself and I wouldn't be able to climb the stairs in a few years. I'm now on Methotrexate and hydroxchlorquine which although hard from time to time, allows me to retain a sense of well being for much of the time. My recommendation though would be a nice space in a garden or park and the gentle practice of Tai Chi.


    Name: Tess Jelen
    Email_Address: t.jelen@btinternet.com
    From: London
    Found_Us_Via: Internet Search
    Date: Monday, April 27, 2009
    Time: 03:42 AM
    Comments:
    My daughter has developed confirmed lung sarcoidosis. But struggling with medication. waiting on confirmation if confirmed heart irregularlies caused by medication or sarcoidosis spread to heart. Already a fear of unconfirmed brain sarcoidosis (bell's palsy symptoms)


    Name: DebbieM
    Email_Address: randd@fuse.net
    From: Florence, Ky.
    Found_Us_Via: Linked Site
    Date: Thursday, April 30, 2009
    Time: 11:24 PM
    Comments:
    Hi, I hope you will help me. Have you or anyone you know had knee fusion surgery? Was it helpful? I am scheduled for one next week and am terrified. Please write soon. Thanks.



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    May 2009

    Name: Lisa Brown
    Email_Address: lisarbrown77541@yahoo.com
    From: Bay City,Texas
    Found_Us_Via: Internet Search
    Date: Thursday, May 07, 2009
    Time: 09:54 PM
    Comments:
    HI!!! I have had sarcoid since 2002. An last year in 2008 I got really sick because I got off my medicine and i didn't get my peroid for 4 months. Well I started taking my meds again and my peroid started back in up in July of 2008 and I have been getting it every month since then, but it only last for 2 to 3 days max. Now that I am healthy again me and my husband have been trying to have a baby. An so far theres been no luck. Now I am starting to think that I can't get pregnant because of those four months that I didn't get my peroid. If there is anybody that has had trouble conceiveing or who has had to same problem please let me know


    Name: Marvin Fleischman
    Email_Address: m0flei01@hotmail.com
    From: Louisville, KY
    Found_Us_Via: Internet Search
    Date: Sunday, May 17, 2009
    Time: 10:35 AM
    Comments:
    Have been diagnosed with pulmonary sarcoidosis. Primary symptoms :frequent deep coughing, sometimes dry, sometimes wet, sometimes cough up a gelatinous mass. Shortness of breath after coughing, shortness seems to diminish as I exercise - walk, bike, lift weights. Coughing spells tire me out. Other symptoms are sore throat and nasal discomfort, like an allergy. I do have allergies, live in the Ohio Valley, and had walking strep pneumonia Oct. 2008. Severe coughing seems to have started after bronchconscopy. Any suggestions as to alleviating symptoms, especially coughing, without going on corticosteroids or other "heavy" medications?


    Name: Kaan Kaplan
    Email_Address: kaankaplan09@yahoo.co.uk
    From: UK
    Found_Us_Via: Internet Search
    Date: Saturday, May 30, 2009
    Time: 06:09 AM
    Comments:
    I have been diagnosed with sarcoidosis for over 2 years now, it started with "lumps" to my forehead and temple. My doctor took samples from both, which led to the scar tissue opening (3 months later) and has left nasty lesions. I have taken pednisolone and it has not worked the lesions have been weeping and admittedly been getting worse!! The doctor has now put me on Prtopic...will this help?


    Name: barbara
    Email_Address: bopareena@yahoo.com
    From: long island
    Found_Us_Via: Internet Search
    Date: Saturday, May 30, 2009
    Time: 10:29 PM
    Comments:
    I need to vent. I am back on Prednosone and I can't take getting fat again. I can't move. I am now wheelchair bound.
    The good part is my husband is my caretaker and he is wonderful. Thanks for letting me blow off some steam.

    happy birthday jay!


    Name: Theresa
    Email_Address: totallyhip2004@yahoo.com
    From: ohio
    Found_Us_Via: Linked Site
    Date: Sunday, May 31, 2009
    Time: 07:23 PM
    Comments:
    After nearly 2 yrs of seeking treatment for uvitis, I was diagnosed with Sarcoidosis. This being the cause of the inflammation in my eyes. I also have several nodules in my lungs. I am seeing both a retina specialist and a pulmonologist. I have tried the prednisone, but do not tolerate it well at all. My problem is that the specialists only want to treat that area, and I need someone willing to treat the rest of the system as well. I have had lots of leg, ankle pain and swelling. General achiness and just plan not feeling well. I do suffer from b12 deficiency and am sure that this also is affected, but who will treat the total system? I have insurance, but limited resources otherwise, and find myself in a pickle because my husband has many chronic health issues that require much needed medication, at a great expense to us. He is totally disabled, and has no RX coverage at all due to the prohibitive cost to put him on my employer group insurance plan. What is a person to do when the need is there, but the finances aren't and the answers don't seem to be coming from the doctors you see. It gets rather discouraging.


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    June 2009

    Name: michael graves
    Email_Address: michaelgraves@hotmail.co.uk
    From: cambridgeshire, england
    Found_Us_Via: Newsletter
    Date: Tuesday, June 02, 2009
    Time: 09:14 PM
    Comments:
    Hi. I have been diagnosed with sarcoid for 2 years now. it all started when i had to go to hospital for a blood test, i had been feeeling dizzy and breathless for months. the results of the blood was back within 2 hours and i was rushed into hospital. they told me i had a blood clot on my lung and i was going to die, when i didn't they then sat me down and told me i had cancer and was going to die, within a month i was still walking about and a doctor then told me i had aids. it goes on and on, when my aids test was negative i was then told i had cancer again, after 3 biopsys i was diagnosed with sarcoid. i have the usual aches in my joints and muscles, my chest is heavy and some days i feel like im pulling a truck behind me. my sinus problems are constant and my water retention is terrible. what thing i am wondering especially, does anyone have sharpe stabbling pains in the feet, hands and private parts???? very embarrasing to keep dropping the trousers to endless doctors ony for them to scratch their heads!!! can anyone out there give some hope for the future? even at 35yrs of age i feel well into my 50's although looking at me you wouldn't know anything was wrong, people even keep telling me how well i look!!!!!! its true others think you are milking the condition, its nice to know im not alone.


    Name: Karen Crandall
    Email_Address: crackpta@aol.com
    From: Holt, MI
    Found_Us_Via: Local Support Group
    Date: Saturday, June 06, 2009
    Time: 07:19 PM
    Comments:
    My name is Karen and I am going through testing for sarcodoisis and need some support, I see the pulmonologist in our hometown next week!


    Name: EUREKA DAWSON
    Email_Address: eureka.dawson@yahoo.com
    From: Pontiac Michigan
    Found_Us_Via: Internet Search
    Date: Monday, June 08, 2009
    Time: 01:49 PM
    Comments:
    My concern is in regards to my Husband Miguel. He was diagnois with Sarcoidosis about 7 years ago, our first year of marriage. it started in his lymph nodes, then his lungs, abdomen, skin, right eye, and lately his bone marrow. He has been on prednosine high dose low dose along with other medications. Were in the process of trying to wean him off the medication however ever time they try his condition get worse. My concern is that it doesn't seen like any of his doctors are concern all they do is prescribe medication. My husband see 7 different specialist for this illness and it seems like his condition is not getting better. i don't know what to do he's in pain everyday and i don't know how to help him.


    Name: John Wilson
    Email_Address: johnmwilson3@gmail.com
    From: SF Bay Area
    Found_Us_Via: Internet Search
    Date: Monday, June 08, 2009
    Time: 11:13 PM
    Comments:
    Hi. I'm 41. Two months ago I saw my GP for a dry cough that just wouldn't go away. She order a chest X-Ray, then a CT scan, and finally said I had a mass in my right upper lobe and sent me to a pulmonologist. The pulmonologist did a bronchoscopy, and then next day called me to say it wasn't cancer. She said it was tuberculosis and put me on a four-drug antibiotic cocktail. But, my skin test came back negative for TB, as did my blood test. The AFB stain from the biopsy came back negative, and finally the culture from the biopsy came back negative. So, next step was off to a surgeon for a VATS lung biopsy. The biopsy was quite painful and required a 3 day hospital stay. A week later my pulmonologist told me I had sarcoidosis, took me off the TB meds, and put me on 60mg prednisone and sulfamethoxazole. I haven't had any skin involvement, but I have been having severe pain in my left calf near the ankle since January 2009. I feel the leg pain is related to the sarcoidosis, but my Orthopedic doctor insists the leg pain is due to a narrowing of some nerve tunnel in my lower back. He is recommending a cortisone shot in my back; since I'm getting no relief from 60mg prednisone I can't see how a steroid injection is going to cure anything. Can anybody point me to some hard facts that link bone/joint pain to sarcoidosis? Also, any recommended treatments for the bone/joint pain would be appreciated. Many thanks in advance!


    Name: Audrey Nelson
    Email_Address: audreyciam@yahoo.com
    From: Flower Mound, Texas
    Found_Us_Via: Internet Search
    Date: Tuesday, June 09, 2009
    Time: 07:39 PM
    Comments:
    I was diagnosed in 1998 after having a episode of "Sun Downers". Have lesions and loss of pigmentation on extremeties. Have Rheumatoid Arthritis, acute sleep apnea, Enlarged lymph nodes throughout body.Have recently been diagnosed with temopral artritis, swelling with in skull. I am on high powered steroids and Naltroxene. AM wondering what other meds have been tryed and if any assistance for the medical coverage has been found by anyone. I work contract nursing and medical benefits not offered. Any help would be appreciated, please email. Thanks, Audrey


    Name: Kay Crump
    Email_Address: slug11954@yahoo.com
    From: West Virginia
    Found_Us_Via: Internet Search
    Date: Thursday, June 11, 2009
    Time: 11:52 AM
    Comments:
    I was diagnosed with Sarcoid Aug. 08. I was told it was no big deal. My liver is enlarged, my spleen is enlarged. Was told it would go in remission within 2 to 5 years. But I have questions - and they get brushed off. Does the sarcoid continue to spread? I've noticed lately if I run, my chest hurts. My left hand feels like it's asleep all the time. My right hip area hurts so bad I can't lay on it. My knees hurt going upstairs, my left shoulder hurts so bad at times, I can't lift it. I'm 54, I thought this was old age. Now, I'm wondering if it's sarcoid. My doctor told me to take my medicine "Plaquenil" and it would be ok. I'm not fond of medicine and fearful of side effects. So, how do you know if it's sarcoidosis or not? Will it go away? Am I being paranoid? I don't know what to expect. Any help would be appreciated. People at work call me "Sarcoid Sally"


    Name: Maureen
    Email_Address: mtkishbaugh@hotmail.com
    From: Pennsylvania
    Found_Us_Via: Internet Search
    Date: Friday, June 12, 2009
    Time: 03:04 PM
    Comments:
    When my symptoms started, I thought that I had asthma or that I was just out of shape. Then other things started to happen: granulomae surfacing on my skin, heart beating so fast and hard that it shook my body, white spots in my eyes, dizziness, frequent urination, doubling over with pain... I thought that I was having trouble with my gall bladder. Doctors told me: "You must be depressed. Try some Prozac," "You're too young to have this many things wrong with you," and my personal favorite,"You're wasting my time." Finally my gyn was willing to do an exploratory for the pain that caused me to double over. He saw the pre-op lung xray and thought it TB! Of course, I was able to see a pulmonologist the very next day. He wanted me to go on steroids. I refused even though my PFTs were below 50%. Instead, I went to a homeopath who put me on an immune system cleansing diet. I was doing so much better until my husband died suddenly. I stopped eating right and gave up walking. It's time to go back to what made me better because all the symptoms have returned.


    Name: DebbyElaine
    Email_Address: evangeline67@hotmail.com
    From: Pennsylvania
    Found_Us_Via: Internet Search
    Date: Sunday, June 14, 2009
    Time: 09:08 AM
    Comments:
    I was originally dx. with Atypical Polymyositis and Sarcoidosis and the process first was identified in my lungs but I am profounddly affected my weakness in my muscles. My understanding is that Sarcoid was also found in the muscle fibers. I am fighting debilatating weakness, fatigue and loss of mobility. Activity exacerbates the disease process and I feel that the pattern in my lungs has been hard for pulmonologist to treat. I have had multiple pneumononias and the status of lungs has not been good. Do you experience muscle weakness and loss of mobility?


    Name: diane feliciano
    Email_Address: felicianod36@yahoo.com
    From:
    Found_Us_Via: Internet Search
    Date: Monday, June 15, 2009
    Time: 05:50 AM
    Comments:
    i wasdiagnosed about 5 years and yes it is not easy. my mother has lived with it for 29. it takes a lot of hard work, patience with your body and do what you can when you can. this is just a little bit of advice, i'll have more later.

     

     

     

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