April 2010 Message Archive



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Name: mrs s singh
Email_Address: savys9@gmail.com
From: south africa
Found_Us_Via: Internet Search
Date: Monday, April 05, 2010
Time: 05:34 AM
hello i have been diagnosed with sarcoidosis in feb 2009 currently on azapress100mg prednisone20mg oxygen daily but stil very tired can u help cause doc says that he cannot do anymore besides continue with meds and regular blood tests

Name: Lindsey
Email_Address: lbfaulkner@yahoo.com
From: Arkansas
Found_Us_Via: Internet Search
Date: Tuesday, April 06, 2010
Time: 12:55 PM
My name is Lindsey, I was diagnosed with sarcoid about 5 years ago. I am currently not on medication. I had a lymphnode biopsy and it had granulomas in it. I was sent to rheumatologist and she keeps testing my lungs and urine. I never have any thing wrong with my lungs, but my urine calcium levels are always high. I have night sweat REALLY bad and instead of assuming its from sarcoid she keeps saying its probably my birth control or she tests me for tuberculosis. My eyes were fine when I was tested a few years ago. But since she wont test any other part of my body but my lungs, I'm afraid that its in another serious area, but I wont ever know. I have mild joint pain also, usually in my lower back. Has anyone else had these symptoms and what tests were run on you?

Name: Krista Weigel
Email_Address: weigelmom@charter.net
From: Holmen, WI
Found_Us_Via: A Friend
Date: Wednesday, April 07, 2010
Time: 09:58 AM
HELP…that's about all I can say at this point. My husband was diagnosed 3 years ago with Sarcoid at age 29. Two years ago he was told he had fibromyalgia and shortly after that kidney cancer. The cancer was removed and is in remission but sarcoid was found in the portion of the kidney that was removed. I also believe that he is depressed. At age 32 (next month) he is already disabled (on Social Security) and had to quit his job because of the pain and meds that he’s on. We have tried just about everything out there, Methotrexate, Gabapentin, Amitriptyline, Nucynta, Plaquenil, Piroxicam the list goes on. Currently he is on Lyrica, Fentanyl, Hydrocodone, prednisone, Seroquel and then a gamete of other meds for the side affects i.e. high blood pressure, gastro problems, sleep. I guess I’m wondering what has worked with others. Has anyone had success with Enbril, Remicade or Cyloxan with active or non active sarcoid and FM? Please post or email me…I’m at the end of my rope and our Rhume isn’t helping much and our family doctor feels as if she would be crossing a line if she tried these meds…I work full time, take care of him and our 4 year old. I don’t know how much longer we can go on like this. Thanks for any information or advice.

Name: Kimmie Renee
Email_Address: rklacy@sbcglobal,net
From: Missouri
Found_Us_Via: Linked Site
Date: Friday, April 09, 2010
Time: 03:10 PM
nice to have someone who understands

Name: Lauren A.
Email_Address: ilovemassage22@yahoo.com
From: Louisiana
Found_Us_Via: Internet Search
Date: Friday, April 09, 2010
Time: 08:35 PM
I have been recently diagnosed with sarcoidosis. It actually showed up as a white spot on my tongue. The doctors that I went to had never heard of or seen that in their practice. Has anyone ever experienced this? I had been going to an internal medicine doctor to try to figure out this extreme fatigue that I had been having. I can't even remember the last time I haven't been tired. And it doesn't matter how much I sleep , it never seems to ease up. Along with brain being foggy. I ache all over, especially in my joints. Everything feels like I'm picking up 50 lbs sometimes. Sometimes I have good days, but it seems like I have more and more bad days than anything. I had been through a handful of doctors, most just thought I needed more sleep, or I was depressed. Some of them even thought I was crazy. By luck I got a lesion pop up on my tongue, don't even know how long it had been there. Went to an ENT , did a biopsy, and Sarcoidosis is what they found. I'm just so happy to have an answer finally. But I know it is just the beginning. I am currently looking into a specialist. Does anyone have one to suggest? Any information would be helpful and much appreciated. Glad to know there is a place like this that understands what I've been going through.

Name: Donna Jean
Email_Address: deee0912@aol.com
From: louiville,ky
Found_Us_Via: Internet Search
Date: Tuesday, April 13, 2010
Time: 10:49 AM
I am in the process of having testing done to confirm sarcoidosis. To date I have had blood work, chest xray, pulmonary function test and a EKG which all came back normal. I am waiting to see a pulmonologist next week. I have skin problems and had 3 biopsies taken that came back as granulomas. I have a dry cough at nite sometimes but no pain anywhere. I have acne on my face and red spots on my elbows, ankles, arms and legs. I have had the skin problems since October. I apply 3 different types of creme each day twice a day. What can I expect from this disease? Thanks for any help on this!!!

Name: Sherimommie
Email_Address: sheri@pectol.com
From: Utah
Found_Us_Via: Internet Search
Date: Thursday, April 15, 2010
Time: 06:43 PM
My diagnosis came in 1998 after two trips to different emergency rooms for severe abdominal pain. The first time I was sent home with pain pills for “flu” and iron for anemia. The next day, after the pain pills wore off, my son took me into the city to a “real” hospital. I was soon in emergency surgery to have a portion of large intestine removed which had perforated. During that hospital stay I was told that x-rays reveled spots in my lungs, liver, kidney and spleen as well. Of course that means the big C WORD!! Fortunatly, a couple of weeks later after tests, the results were in … Sarcoidosis. What?!! No one I knew had even heard of it. Since that time I have discovered a lot about this disease. Here are some of my thoughts. · Many (most?) doctors don’t know much about it. · Many will pass off your complaints as unimportant or unrelated. · Trust your gut – you know your own body. · I suspect a great many of the varied “conditions” sarcoid sufferers have are, in fact, related to sarcoidosis. These include arthritis, extreme fatigue, diabetes, nightsweats, generally feeling ill, headache, diverticulosis, gastrointestinal woes of all sorts, dizziness, loss of vision... Well the list goes on and I admit we do sound like nut cases. But the pain is real. · I suspect there is something in our environment, what we breathe or eat or drink – something – that has our own immune system on the attack and that is the key. · Everything we know about a healthy lifestyle really does help. Keep your weight down. Leave “processed” food alone as much as possible – there are a multitude of additives that could cause you problems. Stay active. Keep a positive attitude. Find a spiritual center. Don’t drink. Don’t smoke. Don’t use drugs .. and be very careful of the prescribed ones too. · Doctors are still just “practicing” medicine, but they are the best resourse we have so use them. · Thank God for the access we have to medicine but remember drug companies have to sell their drugs. Money is the bottom line. · In the end, you don’t get to choose all your circumstances in life but you do get to choose your attitude and that makes ALL the difference.

Name: Maureen Gay
Email_Address: gaypinkgirl@aol.com
From: Riverside, California
Found_Us_Via: Internet Search
Date: Wednesday, April 21, 2010
Time: 08:39 PM
I was diagnosed with Sarcoid in 02. It took 6 years of going from doctor to doctor with symptoms before I took it upon myself to pay to have a body scan done on my own. After my body scan showed clusters of nodules and scarring in my lungs a lesion on my liver, severe inflamation in my chest and lesions in my abdomen...I was then finally taken seriously. I had a biopsy and got the diagnosis. I have all the symptoms that have been listed on here but in my case I have never got into remission or had any relief from the fatigue, chest pain, joint pain, pain in my lymphnodes including the groin. Right now, I am writing on here to see if anyone is getting severe chest pain. I had to go to the ER the other night because it is so bad. Of course, most doctor's know nothing about our illness and don't know the first clue of what to do. It hurts really bad on the left side. I have always gotten chest pain but not like this. Something has changed because it's not going away. It has been a week now in constant pain. It goes from behind the heart all the way to the bra line in my back. Sometimes it's a stabbing feeling, other times it is a burning feeling (not like heartburn) or it is a dull pain. I am getting worried cause I don't have insurance. I can barely get through work each day. It's just not going away. Hurts when I breathe in. They said I don't have a collapsed lung or anything. I'm about to jump off a cliff with this pain. Anyone out there have this?

Name: Gwen L.
Email_Address: dalmstls21@yahoo.com
From: Pittsburgh Pa.
Found_Us_Via: Physician Referral
Date: Monday, April 26, 2010
Time: 01:16 PM
Hi everyone I am newly diagnoised with sarcoid and I have a sister who died from this in 1993 at the age of 33. Needless to say I am afraid. I have witnessed first hand what the disease can do. I would like to reach out for support and I would like to be supportive of others also. If there is some one in the Pittsburgh area who would like to chat or anyone else for that matter please respond. My fear is starting to get to me. Looking forward to hearing from you. Thank God for this forum I really feel better just knowing that this is available to me and others like myself.


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