SOS-NOW ON FACEBOOK!
July 2009
Name: Lanette
Email_Address:
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From: Virginia
Found_Us_Via: Internet Search
Date: Sunday, July 05, 2009
Time: 08:50 PM
Comments:
My sister has had sarcoid since 2000. My sissy has a great team of
doctors here in VA. She has an excessive cough, along with blowing her
nose alot. The sarcoid has affected her lungs and heart. She is on
oxygen but she gets around well with her portable tanks and at home she
has the big one that plugs in the wall and I have one at my house for
her too. I am so proud that my sissy hasn't let this disease get her
down. She hasn't complained much about pain but she has a lot of fluid
from time to time around her lungs and her back. They gave her Lasik for
the fluid and it has worked well. She stopped taking her medication in
2007 (predisone, the lasik, blood thinners, and the vitamins) and the
sarcoid got worst. She went a year without her meds because she felt
better but it was a bad choice. This is why she is on oxygen along with
the meds she stopped taking. NEVER stop taking your meds. I really like
her team of doctors, they seem very knowlegable about her illness! By
the grace of God and her team of Dr. she is still with me today. If you
can walk, do it, if you can drive, do it, if you can work, do it. If you
can dance, do it. Don't let this get you down. We have changed her
eating habits and now she is doing the same activities I'm doing except
with oxygen and at slower pace so she won't get tired. I'm praying for
all of you. I am glad I found this website. Thank you for allowing me to
share.
Name: Karen T.D.
Email_Address:
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From: Nanaimo Canada
Found_Us_Via: Internet Search
Date: Tuesday, July 14, 2009
Time: 07:24 PM
Comments:
My daughter has had sarcoid since 3 months of age. It is very rarely
found in children(2 children in Canada) ,which makes everything all that
much more difficult. she is now 28 yrs old and it has been one fight
after another. she just had 1st infusion of Remicade. Has anyone had
Remicade and how did that work for you.. Thanks so much.
Name: Cynthia
Email_Address:
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From: Virginia
Found_Us_Via: Internet Search
Date: Tuesday, July 21, 2009
Time: 04:38 PM
Comments:
Hello, I am looking to connect with anyone who has sarcoidosis with eye
involvement only. I am 43 and have inflammation in both eyes, nodules in
lungs with negative biopsy. Doctors are recommending treatment with
prednisone, but I am reluctant. Right now my vision is not affected, but
doctor warns that waiting until vision is affected could result in
permanent vision loss. Any help would be greatly appreciated.
Name: raymond robarge
Email_Address:
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From: ma
Found_Us_Via: Internet Search
Date: Thursday, July 23, 2009
Time: 05:49 PM
Comments:
hello, im 43 and was diagnosed with sarc about 15 yrs ago. i have had no
problems until recently, i have been very tired , had shortness of
breath, my joints ache, nausea, i fall asleep at the drop of a hat but
can only sleep in 4 hour intervals . i made a doctors apt but its not
until aug 19. i have been missing alot of work. it wasnt until today
that i thought it could be sarc acting up.
Name: Dana Scott
Email_Address:
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From: Ky
Found_Us_Via: Internet Search
Date: Thursday, July 23, 2009
Time: 09:48 PM
Comments:
Hi I was diagnosed with Sarcoid in 2006. I never had any symptoms. We
did find out that I had it in 2001 but was never told about it. I have a
great Pulminolgist at Vanderbilt Hospital in Nashville, Tn. Originally I
was put on Prednisone for almost 6 mos. I gained alot of weight and told
my Dr. to take me off it. I also have asthma so Im on a Pulmicort
inhaler. I also have many other medical problems like heart problems,
Polyneuropathy in my feet, both my knees have been replaced and now they
need to be re-replaced they are very painful. I have Degenerative Disc
disease in my back. I hurt from head to toe every day and can barely
climb out of bed in the morning. My first pill in the morning is a pain
pill. No one can tell me why all my joints, muscles and bones hurt so
bad. I cry alot because of the pain. I have just been put back on the
Pred. and on Methotrexate I have never taken this one. I was told that
it can make you very nauseated. Any info from someone who takes it would
be helpful. I make myself get up and do stuff though I pay for it later.
Name: Cathy Ingebrigtsen
Email_Address:
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From: Amelia island florida
Found_Us_Via: Internet Search
Date: Wednesday, July 29, 2009
Time: 12:24 PM
Comments:
Husband newly diagnosed with neurosarcoidosis. interested in discussing
treatments others have been through as well as efficacy of drugs.
