name: regan scherer
from: boston, MA
email: reganstar@aol.com
howfound: WWW Search
Date: 04 Sep 1999
Time: 22:20:18
I am Regan and have Sarcoidosis. I was diagnosed in 1994, and know that I have had it active in my body for much, much longer than that. I can feel when it is active and I can feel where it is attacking most of the time. I was told that I was in remission and totally of the prednisone from Sept 27, 1995 until January 1999. In that time I have experienced carpal tunnel in my wrists and the same in my feet. I have pain in my back and other joints. I live with some degree of pain everyday all day and night long. I was put back on Prednisone from Feb. 1 - June 23, 1999, on and every other day schedule. Hospitalized on Sat Aug. 28, with and in sever pain and Monday, July 30 began a treatment of 60 mg a day. I found that my current Primary Care Physician would rather send me to therapy than to believe that I am in such pain from a disease that no one seems to understand. I had a talk with her the day I came home from the Hospital and she has agreed to listen to me. I told her I have all the symptoms of arthritis and test me I have none, I have all the symptoms of asthma test me I have none, (and she agreed I come into the office to have breathing treatments it gets so bad, I do not have asthma) I went on and on with Kidney stones, Liver tests that show problems and no liver disease. After about 45 min. she realized that yes all these things as big or as small an issue the core is Sarcoidosis and the Doctors need to listen to the Patients. This has been a strange summer for me. I believe that this disease thrives on sadness and depression as most Autoimmune illness do. I have had many losses since June. I lost a very close friend and neighbor July 4th, barrier him on the 11th. My Father died suddenly July 19th, I flew back to AZ, returning to Boston Aug. 1. On the morning of Aug. 16 a neighbor whom I have known for 6 years died of a heart attack in the park next to my building, I saw and spoke to him everyday and every time I left my building. Sunday Aug. 22 two more friends and neighbors passed away and one went had a stroke and into a comma. I was Hospitalize Sat. 28-Tue evening Aug. 1. I came home to find out on Thu morning that one of my closest friends, the first person I called after immediate family when my Father died, and who I called from the Phoenix Airport when I was returning home to see if there was anything I could bring him back. Was killed in a tragic and senseless automobile accident about 4:45am Tue. Aug 31. I went to his funeral last night and I am in shock and devastated. I am trying hard to stay positive and for now I am just staying neutral. The things I cannot change the fact that I am grieving for these losses and losing the three strongest men in my life the strongest of my support system, the people I would call in my times of need, like now. I will be strong and not let this disease take me. Have faith and know that what you feel counts. Don't be afraid to speak up. regan :) Boston
Your Name:
Janet ThompsonYour Name:
Karen HudsonYour Name:
Alison CrudupHello Everyone, I have posted once before several months ago, and I have noticed on several occasions where some of you might be putting yourselves at unnecessary risk. I am an RN (on disability retirement now 57 years old), with 30 years of experiance and I wonder if your physicians are informing you of the importance of being weaned off of Prednisone. The circumstances are usually not disclosed, but several of you have said ''I was on prednisone but it was such a horrible drug I quit.'' Now perhaps you quit under a doctor's supervision, and that's great. That's how you should do it. If you suddenly just stop prednisone, you can cause a dangerous reaction from your adrenal glands which can be life threatening. Please, please ask your doctor's how to be weaned off and don't just take it upon yourself to quit because of side effects etc. It could very well kill you and that's a medical fact. I was diagnosed with Sarc. in 1991. Interestingly, my Mom had died just 3 months before and at that time I had severe laryngitis and an exhausting cough, the tiredness and vasculitis which was the worst in my ankle joints. I have just recently started coughing again--but also have just been diagnosed with PTSD as a result of 2 1/2 years in Viet Nam during the war. So now I have to have everything checked out as it may be emotional or it may be the Sarcoidosis returning. I have tentatively been newly diagnosed with neurosarc--numbness is my toes, feet burning and tingling; sharp, stabbing pains in my feet, especially bad at night; killer headaches etc.I have several white spots on my brain which are believed to have been caused by vasculitis. I have never regained my endurance, but now I have to work on the PTSD (Post traumatic stress disorder) angle, too. It should be interesting to say the least. I wish you all well. I have had some wonderful letters from my last posting--thank you to each who wrote. I'd love to hear from anyone. Betty
name: Ray
from: Alaska
email: raybeth@gci.net
howfound: Linked Site
Date: 14 Apr 1999
Time: 05:05:59
Hi to all, I was diagnosed with sarcoidosis about 9 years ago only one year after a very serious fall which cracked my sternum, broke my wrist, knocked me unconscious and left me with a tender spot on the top of my head. Six months after the fall, I lost my sense of smell and taste. Six months later there was the symmetrical rash all over my body. After the chest x-ray, it was initially diagnosed as possible lymphoma cancer. Then there was the CAT scan, the mediastenoscopy, the MRI, many other tests, a 2nd opinion to include a bronchoscopy and many more tests. All of the above was said to be consistent with sarcoidosis. The Doctors try to say the fall and trauma are not connected to the sarcoid. My opinion is that it either caused the sarcoid or caused the flair-up of the sarcoid. I would truly appreciate hearing from anyone who knows of any cases where there was an injury or trauma preceding sarcoidosis. This information could help me a lot and could be of some help in conquering the mystery of sarcoid origin. Thanks, Ray
June 30, 1996 - D. Bye. I was diagnosed with sarcoidosis after being involved in a motor vehicle accident in which my lung was punctured. Immeditaly afterward I began having shortness of breath and other symptoms of sarcoid. I do not believe that I have this illnes but my doctors insist that I do. If anyone has any information on whether this disease can be triggered by a trauma please reply. Thank You.
Your Name: Thomas Mirabella
From: Colliers WVA
Email Address: tom@uov.net
Found S.O.S. via: Linked Site
Comments: Found out that I had this disease when I was in a car wreck. I just got out of the NAVY. Yes I was in the last war. So if anyone knows anyone who might got this threw the war or lives in WVA please e-mail us back. Thank You Thomas Mirabella
Your Name:
Deana Nealon
THE TREATMENT NO-ONE MENTIONS Rose Finley, RN (now off-line)
I've always been very fortunate in my choice of friends. My best friend is a counselor who specializes in stress management, and we've collaborated a lot on body/mind subjects like illness over the years. All of us are aware by now that we have a certain gene structure which predisposes us to sarcoidosis, and most of us can point to stressful periods and events before our diagnosis. We have no control over that; it's a done deal at this point. This is something we share in common with people who have just been diagnosed with cancer, heart disease, and a number of other potholes in this road of life. There IS something we DO have control over, however, something which probably helps heal us as much as any treatment or medication we take--controlling our stress level.
Over ten years ago, I was diagnosed with sarcoidosis. I knew at that point I had to decide which was more important: my resume or my life. I chose life, and I have been in remission for ten years. I don't think this is a coincidence, because I have been practicing meticulous stress management for all of those ten years. I continued to work and carry the responsibilities of a single mom, but I dropped everything non-essential from my life. I began to practice the art of slowing down and enjoying life more--carving out time which was mine each day to do something restful, such as closing my eyes and listening to music, and meditating, either by reading something inspirational or just thinking of nothing at all. This gave (and continues to give) my body mini-vacations during the course of the day, so my energy can be used to bolster my immune system.
This practice is often taught to newly diagnosed cancer patients, but it truly doesn't require a teacher. It does require learning the self discipline to say NO -- to extra activities, responsibilities, or anything else that revs up your stress level. It's so liberating to realize that responsibilities will be handled, whether we choose to handle them or not!
You didn't give yourself this disease and neither did I. It just happened. But now that it has, increase your treatment regimen to include rest for your mind, as well as your body. When your schedule gets too tight, look for things that can be eliminated. Set your REAL priorities -- like loving your spouse or significant other, playing with your children, seeing your grandchildren grow up, having more time with your friends, being around to experience the joys that a lower stress life brings. So don't just stop in mid-run to smell a few flowers; gather a huge bouquet and sit down an hour or so to enjoy it!
--Rose Finley