SOS-NOW ON FACEBOOK!
March
Name: Constance
Email_Address:
constance.hazell@yahoo.com
From: new York
Found_Us_Via: Internet Search
Date: Saturday, March 13, 2010
Time: 07:17 PM
Comments:
My name is Constance, and I was diagnosed with Sarcoidosis last October,
2009 after being being extremely ill for about 5 months. I saw about 4
doctors before I was properly diagnosed. At that point I had been
coughing non-stop for about three months, lost 62 lbs, had pain in every
joint and could not dress or bathe myself. I would go to work, close my
office door and lay on the floor for hours. I also completely lost my
taste for food and only could eat fruit and drink water. A diagnosis was
made after doing a blood test, several MRIs and a biopsy on my lungs and
pancreas. I have swollen lymph nodes in my lungs, pancreas and eyes, and
my skin is also affected. I am being treated with Prednisone, but very
concerned about the side affects also the skin lesions come back every
few weeks. I suggest asking your doctor to test you if you have any of
the symptoms I mentioned
Name: Diana Slager
Email_Address:
frecklez30@yahoo.com
From: Illinois
Found_Us_Via: Internet Search
Date: Monday, March 15, 2010
Time: 11:27 AM
Comments:
I am A married mother of 2 boys I got sick end of April 2009 had a cough
that just wouldn't go away then the Dr.s thought i had a hernia and sent
me for an x-ray. I was told they found a spot on my left lung and they
did a ct scan with dye right away. Was then sent for a biopsy which
resulted in a collapsed lung. Sent me home 2 days later back in er cause
i couldn't breathe. Two chest tubes later and a week in hosp. still was
unsure what was wrong. Another biopsy, pet scan still didn't know. Dr.'s
thought possibly lymphoma. Ended up with a fever of 104 for over a week
round of antibiotics and still not feeling better, went back to er they
admitted me told me I had air in my liver and they were going to take
the right side of my colon and give me a colostomy bag. Thank god they
were wrong they just took my appendix (nothing wrong with that though).
Eight weeks later had a thoracotomy another chest tube and then the Dr.s
diagnosed me with Sarcoidosis. I understand I will never be cured but
pray for my children's sake they never feel this pain. My joints hurt I
can't play with them the same because I can't catch my breath. And was
wondering if factors of my father being subjected to agent orange didn't
contribute to this. Lets help find a better cure than steroids
Name: AmyLynn
Email_Address:
alburke03@yahoo.com
From: Buffalo, NY
Found_Us_Via: Internet Search
Date: Wednesday, March 17, 2010
Time: 02:45 PM
Comments:
I am a 34 year old white female and was just diagnosed with Sarcoidosis,
after suffering with symptoms for over 3 years. It started in my wrists,
and gradually moved to my legs, where I was initially diagnosed with 2
sprained ankles and directed to wear Swede-o braces which were
excessively painful to get off and on. After demanding a referral to a
rheumatologist, I was told it was rheumatory arthritis/inflammatory
arthritis and started receiving cortizone injections directly into both
ankles and had various other medicines such as Prednisone, Methotrexate,
Oxyprozen and Humira injections. I was ultimately diagnosed with
erythema nodosum after trying my luck with another rheumatologist. I had
a really tough time with the side effects of Prednisone, particularly
major hip pains and aching, which did not leave once use of the
Prednisone was discontinued. About 2 years ago, I woke up with a blood
red eye and made an appointment immediately with an eye doctor, who
eventually referred me to a retina specialist, who diagnosed uveitis and
with whom I started receiving Avastin injections. Since my husband and I
are attempting to start a family, I can no longer use the Avastin and
requested a referral to the Cleveland Clinic for more help. Nobody could
tell me what was causing all of this inflammation until now. A chest CT
confirmed the Sarcoid diagnosis with multiple enlarged lymph nodes. I'm
not sure what my future holds now and am a bit scared. But I am thankful
to finally have the answers to questions I've been asking for so long
since, other than the symptoms described above, I am generally healthy!
Name: Ben den Holder
Email_Address:
bendenholder@gmail.com
From: Belgium
Found_Us_Via: Linked Site
Date: Sunday, March 21, 2010
Time: 01:43 PM
Comments:
I was diagnosed 2 years ago (doctor thought I had lung cancer and gave
me 2 months to live)But I have had this condition a lot longer and can
live with it. I try to go running once or twice a week, still work,
still work in the garden as well as lots of other stuff. Looking around
for natural remedies because I don't feel like swollowing a lot of
chemical rubbish. So if anyone knows of anything let me know. On another
forum I noticed someone was taking turmeric and someone else tea tree
which seemed to help a lot. Thanks Ben
Name: Sweet Sadie
Email_Address:
sadiearchie@yahoo.com
From: Tampa
Found_Us_Via: Linked Site
Date: Monday, March 22, 2010
Time: 11:30 AM
Comments:
I would like to say to all those who are fighting Social Security for
their disability due to a rare disease, DON'T GIVE UP! I was a Social
Worker and I loved doing my job however, due to my condition I may no
longer expose myself to others. I've been fighting SSI for almost 3
years now and my condition is not going nowhere until I die. I am in
stage 3 of sarcoidosis unfortunately so returning to work is not an
option, only a dream. God Bless Everyone!
Name: Katie Rankins
Email_Address:
havehope08@hotmail.com
From: Toronto, Ontario
Found_Us_Via: Internet Search
Date: Wednesday, March 24, 2010
Time: 10:59 PM
Comments:
I am 19 years old, and I was diagnosed with sarcoidosis around the age
of 11 or 12. Back then I use to have the regular redness and bumps on my
legs and arms quite frequently. As I grew older it still came back here
and there, but then I found out that it had caused inflammation in my
eye. Now, I am suffering from eye pain, redness, and headaches. I just
started medication to calm down the inflammation, but I am worried. I
hope everything gets better! Does anyone else have the same problem?
Please reply back! - Katie.
Name: kathleen Manser-Groch
Email_Address:
voodoo623@verizon.net
From: Philadelphia PA
Found_Us_Via: A Friend
Date: Friday, March 26, 2010
Time: 11:59 AM
Comments:
I was dx with sarc in 1999 and have had so many different symptoms from
this disease...but this is a new one for me. Has anyone else had this
happen? While driving home on Friday night and my right eye started
seeing the traffic light in wavy threes, then I was seeing traffic in
wavy threes etc. I drove home with my right eye closed. By the time I
got home (about 7 minutes) the symptom was gone. Now I am noticing my
right eye is larger than the left eye. It seems to protrude more than
the right. Above the right eye, right under the brow is puffy, it also
tears a lot. I made an appointment with my Neuro-ophthalmologist, I go
on the 20th of April. I say it is the sarc but never read of this event
before. Thanks for listening.
Name: brandie
Email_Address:
brandie_williams69@yahoo.com
From: pearland
Found_Us_Via: Linked Site
Date: Friday, March 26, 2010
Time: 03:28 PM
Comments:
my lung dr is not skilled to treat my sarcoid lungs i need a sarcoid
specialist please advise before i die. tired of dumbass drs who dont
care how sick or how much pain we are in! 281-741-0644
Name: Cindy McCall
Email_Address:
freetobeme03@gmail.com
From: missouri
Found_Us_Via: Internet Search
Date: Saturday, March 27, 2010
Time: 09:01 AM
Comments:
OMG, I cant believe that theres people out there just like me, this site
is amazing. I was diagnosed with neurosarcoidosis about a year ago,
after five years of being completely miserable. I have extreme fatigue,
shortness of breath, heart problems, memory lapses, muscle and bone pain
and weakness, swelling of joints, visual disturbances, tremors and
balance problems. I had actually begun to think I was crazy because
doctors couldnt find what was wrong, and the symptoms were getting
progressively worse as time went on. My doctor started me on 40mg of
prednisone, then started reducing the mg, every time we get under 30mg
my symptoms return and my ACE level goes up. Of course I havent read all
of the entries here but I havent read any messages that talk about the
embarrasment that neurosarcoidosis causes. I hate going in public when
my symptoms are active, my head and hands shake uncontrollably, I walk
like I'm dead drunk, my coordination is off. I am just so embarrased I
don't hardly go out anywhere anymore and have lost all my friends.
People invite me out to eat, but that is the worst. I hide the worst of
my symptoms from everyone because I feel like such a freak when they're
real bad. I'm sure this is a problem for others too so I'd like to know
how you cope with it.
Name: Rebecca Goutermont
Email_Address:
click here to email me
From: Silver Bay, MN
Found_Us_Via: Internet Search
Date: Monday, August 24, 2009
Time: 09:21 PM
Comments:
My husband was diagnosed with sarcoidosis about 7 years ago. It is
sickeningly helpful to read your comments and to know we are not alone
in the fatigue, aching, shortness of breath and granuloma camp. Thank
you for sharing. We have a question. Has anyone had, or is it possible
to develop a granuloma in the prostate? My husband had an elevated PSA,
which resulted in biopsies that were negative. The ultrasound did show a
possible small cyst? We just had a recheck which showed the PSA has
doubled. He also occasionally has "stabbing" pain in his privates.
Anyone else? Again, I thank you for sharing. Becky
