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January 2008
Name: Jan Grover
Email_Address:
jan.grover@sbcglobal.com
From: Houston
Found_Us_Via: Internet Search
Date: Wednesday, January 02, 2008
Time: 01:17 PM
Comments:
Hello, I was just diagnosed with Sarcoid this
past month. I really had not had a chance to look on the internet until
today, and I must say the doctors had "underplayed" the significance of
this disease. My heart goes out to all of you, that are experiencing
such painful symptoms. I would welcome any positive information, as I
have not really found any nutrition guidelines that affect this disease.
I did appreciate the hint from the "boyfriend" that said that aloe vera
worked on treating wounds. The prednisone affects that I am experiencing
are no sleep, and the hot flashes. I hope that 2008 finds everyone
better.
Name: Valencia Steed
Email_Address:
steedv@bellsouth.net
From: Georgia
Found_Us_Via: Internet Search
Date: Thursday, January 03, 2008
Time: 07:01 AM
Comments:
Hi everyone, I also have sarcoidosis. It started out as pneumonia, I was
on oxygen and prednisone for 6 months and I started to feel better. I
had back surgery in 2005 when I wasn't aware of the fact that I sarcoid
then and I have just started to feel better about that when I started
having mouth inflammation? The inside of my mouth have blisters and it
burns and hurts and nothing seems to help. I just had a lip biopsy and I
am waiting for the results. I feel terrible. Can't sleep, and I feel as
if its mouse around in my body. This disease
is so funny like that. I pray constantly, that always helps. If anyone
has had this problem and knows about the burning and painful mouth
problems, please contact me. To everyone I just say when you feel awful,
pray and check this forum out. There are people who have it far worse
than you probably do. Keep faith and pray. Talk to you all soon.
Name: joanne M
Email_Address:
jokledis@gmail.com
From: Iowa
Found_Us_Via: Internet Search
Date: Friday, January 11, 2008
Time: 08:59 PM
Comments:
Hi my name is Jo and I was diagnoised with sarcoid of the skin in 04 on
my lip, the doctors that I saw did not really know what it was and
basically ignored it. I guess that they thought as long as I was
breathing OK everything was fine. I started complaining of heart
problems and they also ignored it saying that it was my age I was 50.
It was in July of 06 when things really got bad. I could hardly
breathe, they treated me for asthma/pneumonia. When they finally got
around to take an X-ray they told me I had lung cancer. They rushed me
to pulmonoligist where they did a biopsy and finally came up with the
diagnosis of Sarcoidosis, however the doctors then sent me to MRI where
they discovered sarcoid in my heart, spleen and liver. They admitted me
to the hospital and and hooked up a halter monitor where they discovered
that I was going in and out of V-tack. So a ICD was placed in me. A few
miss happs with the ICD,placed on steriods and methotrexate and here I
am in 1 of 08 and still struggling. No one seems to know how to treat
cardiac sarcoid and I keep hearing that if my lungs are better my heart
also must be getting better. My EKG keep showing small changes and the
cardiologist just ignore me. They smile say they will get back to me
and then I never hear anything. I would really like to hear from
someone with cardiac involvement and know what your experience has been
like.
Name: Stefanie
Email_Address:
stefaniespn@netscape.net
From: Colorado
Found_Us_Via: Internet Search
Date: Sunday, January 13, 2008
Time: 08:53 PM
Comments:
Hi- I was diagnosed with sarcoidosis in 2007, and am a 27 yr old female.
Lymph nodes in my belly were enlarged along with my spleen, which
apparently caused the severe belly pain that brought me to the hospital.
They found granulomas in my lymph nodes during the biopsy. I have had
this belly pain now for 6 months, nothing helps. I was on prednisone 40
mg for 2 months before being told to stop as I was not seeing any
benefits. Also, for the last 2 years I have had recurrent urinary tract
infections. Doctor finally said it is an antibiotic-resistant infection
that has spread to my kidneys. Also having problems with high blood
pressure, sweating, migraines, nausea/vomiting. Does any of this sound
familiar to anyone? I am dealing with the highest level of medical
incompetence here, and would appreciate suggestions from anyone!
Name: Sherygenius
Email_Address:
sherygenius@islam.com
From: Japan
Found_Us_Via: Internet Search
Date: Monday, January 14, 2008
Time: 03:12 AM
Comments:
I am 29 years old and diagnosed with pulmonary sarc in april 2007 in
Japan. But i think this may be old 3-4 years. I have been given a course
of steriods for last six months which show no change in my sarcoidosis.
Recently i have some skipped heart beat problem which may be due to
sarcoidosis. The important thing is that living in this developed part
of the earth we still have no research in finilizing definite stages and
indication of this disease. I have yet no symptoms in my lungs except
some extended lymph nodes and doctors after finishing of steriods just
want to wait for any symptoms. I am hopeful
that this will be cured in future (Inshallaha)and muslim never lost
hope on God. I pray to GOD to give some cure for all of us for
SARCOIDOSIS
Name: LisaCarol
Email_Address:
benlizrose@yahoo.com
From: Houston
Found_Us_Via: Internet Search
Date: Tuesday, January 15, 2008
Time: 04:56 AM
Comments:
Today I see a pulmonologist for the first time. I have not been
offically diagnosed with Sarcoidosis but over the years I feel I
have/had something to cause: 1. inflammation in various organs, skin
problems/sore's on the side of my nose (long lasting) burning mouth,
inflammed eyes had to go in and clean out the scarring, lung granulomas,
enlarged lymphs in the mediastatum (sp) enlarged lymphs from time to
time in the groin and armpits. Inflamed painful parotid gland, shortness
of breath the list goes on and on and on and
on. I now have heart problems and cataracts
that have to be removed. I am a mess. The strangest thing about this
is most sites downplay Sarcoid but when you see patient's comments this
is not a laughing matter. I have also been
diagnoses with hyperparathyroidism but not a true case. I now have
scarring on the lung. My eyes are very dry and the tear ducts are
affected. ENT doctor thought Sgjroens but all lab work came back
negative. I brought up sarcoid and he said no as I was not African
American. I hope this madness ends and I get a firm diagnosis. I do
not want to play this game anymore. This is a
disease that should not be downplayed.
Name: mousedenise
Email_Address:
crazychickden@hotmail.com
From: u.k
Found_Us_Via: Internet Search
Date: Monday, January 14, 2008
Time: 08:06 PM
Comments:
my brother in law is 42yrs old. after a year
of increasing heart problems, he has finally
bn told that he has sarcoidosis of the heart and lungs.
he is always in pain and is unable to sleep or eat properly which
is adding to his general ill health. he has become
depressed and now we hear his only hope is that of a heart and lung
transplant. all this for a man who until
eighteen months ago held two jobs, played
squash regularly, and enjoyed family life to
the full. i am desperate 2 help him by
learning all i can and to access any help and support for my sister.
please if u can help in either areas i
would be
very grateful. thank
you
Name: Linda Weiher
Email_Address:
linda_weiher@hotmail.com
From: Riverside, RI
Found_Us_Via: Internet Search
Date: Thursday, January 17, 2008
Time: 11:19 AM
Comments:
Hi, my name is Linda. I am a 48 year old white female.I was diagnosed
in 1995 with pulmonary sarcoidosis. An ex ray after a shoulder injury
caught a piece of my lung and sent all my doctors in to a panic saying
all kinds of scary stuff. A bronchoscopy confirmed the diagnoses.I did
not pay much attention to my disease. I had no symptoms.Since 2003
things have gotten a lot worse.Now pulmonary stage 4 with Cardiac
involvement.I have less than 27% of my lung capacity left, so I run out
of breath very easy, but my oxygen level remains high enough that I do
not need supplemental oxygen yet.Nor do I need a defibrillator
yet.Outside from being short of breath I am okbut I always know when my
disease is active, as it is right now.I sleep 12 to 21 hours a day and
suffer from extreme night sweats.Gross. Like gallons of ice water poured
on me 5 or six times a night. I used to get up and change the sheets,
now I don't have the energy.I have spent a lot of time on
Prednisone.Matter of fact I was on it when my disease progressed to my
heart.Steroids might help some of you, and for your sake I hope they do.
Never helped me. Just made me fat and crabby.I was put on Pentoxiphylene
nope, nothing there either.Methaltrexate lastly, but I had a few
bad liver labs come back so my doctor took me off of it. My hair was
falling out like crazy from it anyway, so I am glad I am off it.I lost
my job from being off work so much. I was there 13 years.No one wants to
hire me now when they see how frequently I have been off work.I live
alone here in RI. My kids are grown and live in WI, I have a couple
sisters in Co.My savings is gone, totaled my car before Christmas.
Haveenough money for maybe 2 more months rent.feeling a little doomed
right now.I filed for SSD last week. I also keep filling out
applications for every darn job available in my area. I can only pray
that I get some sort of income before I end up on the streets.I am sure
I could make it out there, but my cat is a house cat...I don't think he
would like being an alley cat :) My prayers go
out to all of you.
Name: Rose White
Email_Address:
rose_44_2004@yahoo.com
From: Columbia,Tenn.
Found_Us_Via: Internet Search
Date: Thursday, January 17, 2008
Time: 12:50 PM
Comments:
Name: Cynthia
Email_Address:
cwonus61@yahoo.com
From: Fl
Found_Us_Via: Internet Search
Date: Thursday, January 17, 2008
Time: 02:36 PM
Comments:
My husband has just been diagnosed this week with sarcoidosis. We found
it by abnormal chest xray with fluid in the lungs, they did bronschopy
and found tumor in airway by his lobe, and granualomas in other lung.
His only symptoms have been heavy feeling in chest and dry cough. Since
the bronschopy he has been wheezing. We go to dr next wednesday to start
test and treatments. Need any advice to what test and treatments have
been successful for others. Wondering if other people who have had this
in lungs always have other problems or is the cure rate in lungs usually
good. Completely new to this and would appreciate any help or advice.
Thanks.
Name: kim daniels
Email_Address: kedss@sssnet.com
From: massillon ohio
Found_Us_Via: Linked Site
Date: Monday, January 21, 2008
Time: 01:01 AM
Comments:
I lost my job at a hospital had 28 years in
2000 sarcoidosis let go sept 20 2007 I read
95% how have it work in health care but I want
my job back
Name: CherylM
Email_Address:
Cher3grls@aol.com
From: Louisiana
Found_Us_Via: Support Group Database
Date: Tuesday, January 22, 2008
Time: 11:03 AM
Comments:
Hi All, I have read all of the posts and my heart goes out to all of
you. I am a 40 year old woman. I was diagnosed with Pulmunary
Sarcoidoses about 20 yrs. ago. I had gone in the hospital with acute
appendicitis. After surgery they took a chest x-ray just to check for
Pneumonia and found the sarcoid. Although they didn't know it was
sarcoid at first. They took several tests including a TB test. I was so
scared, thought I had cancer. The dr. laughed at me and said, "Don't
worry, you can live to be 90 yrs. old with sarcoid"
The pulmonary specialist told me that it was a mild case and I
didn't need treatment at that time. Then about 10 yrs. ago I started
having blurry vison and went to the eye dr. he said I had uvitis caused
from Sarcoid in which he prescribed prediforte (steriod drops). It was
kinda strange because everytime I went to his office he would call
several people (drs.,nurses) in the room to look at my eyes. Thank God
he was able to help me to get my clear vision back. I still have
flareups but I am able to get treatment right away. I recently had
episodes with my liver. I had never had problems with antibodics but
twice now while taking them I had a severe reaction,
high fever, nausea, jaundice, dark urine, etc I was in the
hospital the first time and the dr. said it could be related to the sarc.
But because of no insurance he didn't proceed with the test to see if I
had lesions in my liver. I'm wondering if any of the other females here
have had any problems with early menopause? I started with perimenopause
about three years ago. Didn't actually go to the doctor. But I have hot
flashes all through the day and night, fatigue, insomina, severe dry
skin, and I have spots of dry patches on my legs, knees, elbows, and
hands. My hands and feet get so dry, they crack and bleed, making it
hard to walk sometimes. If anyone can relate to any of this please
e-mail me. I need some support. God Bless, Cheryl
Name: tonya bunn
Email_Address: bunn83@msn.com
From: washington dc
Found_Us_Via: Message Forum
Date: Tuesday, January 22, 2008
Time: 02:24 PM
Comments:
hello all ive post here before i just want to share a few word on how i
am coming to grip in dealing with sarciod i didn't have a understand on
why all this was happening to me im on O2 and is pretransplant right now
i used to worry about if i was going to die not see my baby grow up and
just was driving myself crazy so i had to sit and think about all the
things ive done throughout my life and say thing happen for reason and
god my be using me to do his will so as time pass. i came to grips of
walk with the O2 tank and being comfortable with it and now people come
up to me ask question and i give insight of my problem and then its like
they open up to me its like they see something in me like comfort.
im like it not me but it the god in me that keep me going now
when i go to the doctor they say you look good what ever you are doing
keep it up and i tell i dont stress about it any more because it a
purpose so i say to you all let go and let god handle it for you.
Name: Johnsie
Email_Address: jfforj@yahoo.com
From: Maryland
Found_Us_Via: Internet Search
Date: Thursday, January 24, 2008
Time: 06:39 PM
Comments:
I am writing because I need some help or something I have Sarcoidosis,
Fbromyglia and other combination health issuses. Right now my
Pulmonlogist and Rhemuatlogist have just said it is more that they can
do so I am on lyrica,MTX,Planqueil,and others and had 2 Brono,Gallium,CT
MRI CCChest xray I am just tired of trying it is hard
Name: ELIZABETH BUXTON
Email_Address: EMBUXTON@COMCAST.NET
From: NEW HAMPSHIRE
Found_Us_Via: Internet Search
Date: Sunday, January 27, 2008
Time: 02:56 PM
Comments:
I was diagnosed with Sarcoid in the lungs 17 years ago, and have been in
remission for about 10 years. Now I am having a problem with my eye
haemoraging, which the doctor has told me is associated with the
sarcoid.At the beginning of this month I passed out at work (have been
having dizzy spells for some time, but never actually passed out). I
have had all kinds of tests, CAT Scan, EKG, EEG, MRI, multiple blood
tests etc. All are coming back normal, but I am now getting faint
approx. 2 a day. Has anybody experienced anything like this? I travel a
lot for work so am concerned to return until something definitive is
diagnosed as to the cause of this. Also the doctor will not operate on
my eye until he finds out why I passed out?Anybody with any thoughts,
suggestions would be greatly appreciated.Thanks and God Bless you
all.Elizabeth
Name: cindee l
Email_Address: cindeedavon@hotmail.com
From: usa
Found_Us_Via: Internet Search
Date: Monday, January 28, 2008
Time: 11:23 PM
Comments:
hi, my husband has had sarcoid for ten years and is now starting to have
severe memory problems. i was wondering if anyone out there is
experiencing the same and what you are doing about it.
Name: Janine D
Email_Address: janinedust@sbcglobal.net
From: Illinois
Found_Us_Via: Internet Search
Date: Wednesday, January 30, 2008
Time: 08:05 AM
Comments:
Greetings. I was diagnosed this fall after months of tests and doctor
visits for chest pain, cough, and tiredness. I was on a 40 day course of
prednisone and am on singulair and two inhalers. I struggle with my work
commute and force myself to work when I am too sick to be there two to
three days a week. I am concerned about what will happen when I can't
work full time to have medical insurance. Since it not very common,
people don't know or understand what I am going through. I don't have a
limp, broken arm and the only scar is from the mediastinoscopy from the
biopsies, so I don't look sick on the outside. How do you manage to get
through the days?
Name: Ingrid Doll
Email_Address: ingriddoll@aol.com
From: Canada
Found_Us_Via: Internet Search
Date: Thursday, January 31, 2008
Time: 12:01 PM
Comments:
Hi Everyone,My heart goes out to all of you who are battling this
disease. Please keep up the fight as best as you can, trust God to guide
you, your doctors,your paths and to strenghten you as you endure.When I
read your stories, I am amazed by your strength.Here is my story. It has
taken me this long to even write about it.In fall of 2006, I was to the
end of my rope. I had been experiencing symptoms such as racing
heart(nothing/okay)digestive problems and excruciating abdominal pain.
It was so bad that my diet was limited to oatmeal, mashed potatoes,
water,bread,crackers or anything really bland.I was going to the doctor
constantly and she had determined that I was probably dealing with a
gallbladder problem and so I was referred to a specialist. In the
meantime , the pains were so bad that I eventually went to our
hospital's emerg dept. That's when it all started.I was diagnosed with
lymphoma(cancer of the lymph nodes) in Nov 2006. I lost 25 lbs in 10
days and I/We were all devastated to say the least. My husband and I had
to tell our family, friends and church family. I spent the first couple
of weeks in tears. Hardest was telling our child. I was 46 years old,
lived a healthy lifestyle, was happy and contented,Why me?I had enlarged
lymphnodes in my chest, and below the diaphram(very bad)and I was
referred to an oncologist to start chemo treatments. As well, I had to
endure a very painful biopsy. We all lived with this diagnosis for 2
months over Christmas 2006. In Jan 2007, I found out that I did not have
cancer but sarcoid. Never heard of this before.To make this story short
in the last year, I have been to a naturophatic doctor who has helped me
tremendously, I have changed my diet(no sugar as sugar weakens the
immune system) I am under the care of a specialist at one of our
university hospitals and I have returned to work part-time. Also, gained
back my weight.(didn't want to but better)I still have issues with
fatigue,joint pain,some hair loss, and most recently respiratory
ailments such as coughing and cold.I do not know what the future holds
as far as progression of this disease,but,I am trusting God to help me
along the way and to carry me when I need it.To all of you, keep up the
fight, be positive no matter what, trust your heavenly Father and live
life for all its worth.Please feel free to e-mail if you wish and God
Bless.
top
February 2008
Name: Jeri Clow
Email_Address: info@motorsportsillustrated.com
From: phoenix
Found_Us_Via: Internet Search
Date: Sunday, February 03, 2008
Time: 02:45 AM
Comments:
Hello all, I am a 47yo woman. I was diagnosed with sarc in 2001 after
battling some severe eye issues. For the following 6 years, I was
treated every month with pred forte drops and bi monthly steroid eye
injections. I developed glaucoma and cataracts in both eyes. In Aug 2006
I had surgery on the left eye to remove the cataract, empty out the
viscous fluid, sew in a steroid patch to the back of the eye and refill
with fluid. Vision improved but was still really bad. In Feb 2007 I had
teh same operation on the right eye. Better results except, I now have
'wrinkled retinas' and my vision is like looking at everything through a
funhouse mirror (but not so fun). In Sept 2007 I went into the hospital
for a very swollen leg. They did x-rays and cts of my chest and abdomen
to look for blood clots from the leg. No clots but they found multiple
nodules in the lungs (I had been very short of breath for months prior)
and also lesions in the liver and very enlarged lymph nodes. I am
currently on 30mg prednisone but may have to start cytoxin if my ace
levels do not improve. I have constant infections (celluitis in leg and
other skin infections) I have fatigue, breathing problems, tender skin,
pain in areas that I believe to be the lymph node issues and still
cannot see well enough to drive or walk very far without stumbling. I
applied for disability in Nov 2006. They denied my claim even though I
was legally blind at the time. I am not "legally" blind now but I cannot
focus on anything without getting motion sick. I am waiting for a
disability hearing with a judge. My lawyer tells me it may be another
year before I get my hearing. I have been able to get through each day
knowing that God is in control. My only real sadness is that I cannot
work and I am a huge financial burden to my family.
Name: Andrea Nolan
Email_Address: andrea-dean@hotmail.co.uk
From: North Yorksjire
Found_Us_Via: Internet Search
Date: Sunday, February 03, 2008
Time: 12:04 PM
Comments:
Hi I have used this site before and found it really helpfu. What I don't
understand, is that my doctors have sad that my neuro sarc will
dissapear within a couple of years and I look on the website and most
people have suffered for man many years. Are my doctors not telling me
the truth???
Name: Robin Beth
Email_Address: stillkikn1@juno.com
From: New Jersey
Found_Us_Via: Internet Search
Date: Monday, February 04, 2008
Time: 06:29 PM
Comments:
I have read all your stories and I cannot believe there are so many of
you out there. None of you seem to know how you contracted this disease,
but I know how I did. I am a 46 year old female. In May of 2006 I was
cleaning out my finches cage when they flew around and the bedding from
the cage flew up into my face, I choked and gagged. When it was over I
did not think anything else about it. The next day I had a sore throat
on one side and within the next couple of days I was not feeling well at
all, your basic fever, cough, dizzy, heaviness in chest, almost like
broncitis with alittle more added. I went to the dr. and he did a strep
which was negative. He gave me an antibiotic figuring it was my annual
broncitis.(did I mention that within that week the 2 finches died?) Well
the fever went away but I could barely swallow and I could hardley make
it up the stairs because I was so out of breath. I wont bore you with
all the tests and back and forth to the doctor but after about 6 weeks I
finally got a CT scan and it came back with Interstitial Lung Disease
with lots of mumble jumble words but Sarcoidosis was definitely a word
that was used. They immediately sent me to a pulmonary critical care
specialist. Well, his first reaction was "what the hell did you
inhale?"...who remembered? He asked me if I had birds and I said yes,
but when I told him finches and canaries, he told me wrong birds so we
moved on. I had test after test, all negative, all normal. I was in
school at the time to be a medical assistant and I mentioned the birds
to my teacher, he told me the doctor was probably looking at
psittacosis. HUH??? I asked the doctor and yup, that is what he
thought...this is supposed to be under control by the CDC. It is a
specific blood test and only tetrecycline cures it. I tested postitve
and took the medicine...YEA!!! NOPE. I am still not feeling well, chest
pain so bad that I felt like a vice was getting tighter and tighter, I
could barely speak a sentence without taking breathes, my voice was so
harsh and had hardly any volume and I was so tired. The doctor didnt
believe me now and was nasty. He kept handing me inhalers until I had a
breakdown in my car that I wouldnt go back and I prayed. I spoke to my
husband and begged him to get me to a doctor to help me. By the grace of
god my father in law mentioned Deborah Heart and Lung which is right
around the corner from my home. It was not easy to get into because it
was months before they had an opening but I begged her and told her that
I would not live long enough to make the appointment. She agreed to show
my tests and results to their pulmonary department and about 1 week
later they called me. Like a whirl wind I was in, had tests and another
CT scan which was worse than the first one and they scheduled an Open
Lung Biopsy. After 6 days in the hospital and a chest tube for 5 days,
the results were Sarcoidosis. I was put on 40 mg prednisone for 4 months
- any of you that have been on that drug, well I dont have to even go
into the side effects! They keep a close eye on my now but I have asthma
from the Sarcoid which we are trying to get under control. Knowing that
this disease is in my body for the rest of my life and will never go
away, and can awaken any time is very scary to me.I could deal with the
asthma but no more prednisone. I kills me that all of this is because my
birds were sick and all I was doing was cleaning their cage!! People
need to understand that the things we inhale can be so harmful that
sometimes we do not know what it is doing to our organs. My hair also
had thinned out so much and it is still breaking off and I dont know how
to stop it. I have been off prednisone 1 year this past January 2008 but
I am on Advair dikus inhaler. If anyone has an input on how to stop my
hair from breaking, I would love to hear from you. Thanks for sharing
and thanks for listening - we are all lucky to be here and to have
fought this mystery demon - my prayers are for all of you.
Name: K Johnson
Email_Address: minxylady@centurytel.net
From: Alabama
Found_Us_Via: Internet Search
Date: Tuesday, February 05, 2008
Time: 06:23 PM
Comments:
I have had 2 doctors tell me that the lung problems I am having was
originally caused by sarcoid however I am getting worse. The sarcoid is
supposedly inactive. Does any one know of a Doctor that specializes in
the pulmonary part of this disease close to Alabama? Please contact me!
*Admin. Message- Try the
Dr. Database: A
worldwide
directory of sarcoidosis
physicians
Name: Suzanne
Email_Address: veritas@ameritech.net
From: Indy
Found_Us_Via: Linked Site
Date: Saturday, February 09, 2008
Time: 03:49 PM
Comments:
My mother who is 85 has Sarcoidosis. I am 57 and have been worried that
I too may have it. I have a continuous dry cough that comes and goes
depending on the seasonal change. My eyes also tend to get puffy and dry
and itchy. I have been dealing with this for at least 4 years and I am
very tired of these symptoms. I went to an regular Internist and xrays
were ordered on my chest and back. I was also given an ashma test which
was negative. I have not been back to the doctor since he could not find
anything. I even told him that my mother has sarcoid. I was wondering if
someone can tell me who do I see in order to find out what is wrong?? I
wondered if there is a particular specialist for sarcardoisis
that I see? Thanks .
*Admin. Message- Try the
Dr. Database: A
worldwide
directory of sarcoidosis
physicians
Name: mary clayton
Email_Address: saintmom@peoplepc.com
From: OFallon Missouri 63366
Found_Us_Via: Internet Search
Date: Monday, February 11, 2008
Time: 08:23 PM
Comments:
My name is Mary. I had sarcoidosis in my lungs. Also they did a biopsy
on my shin for the erythema nodosum. They watched it and it sent "away".
However, I have autoimmune problems since, some of which include the
little water filled bumps on my scalp, the bumps in my skull that feel
like my head is forming boney spots and sunken spots, my lymph nodes
throughout my body go through their phases of enlargements and I itch
alot around that time. I bruise in places that are inside my legs and
arms where I don't hit them. I also get them everywhere else and they
are about the size of nickles and dimes. They pop up on some kind of
cycle too. Then I loss my female parts for some odd reason, the next
thing was my gallbladder and I had pancreatitus, liver inflamation and
duodenitis. Loss the gallbladder. I have an odd Potassium deficiency, I
have bumpb on my fingers that feel like shards of glass are in them. My
lower legs swell and my feet hurt so bad. THe muschles and connective
tissue pain are the worst, and yes I have those pressure points and I
have other pressure points as well. My whole body hurt both inside and
out. The itching this week is mostly in the evening and before I go to
be. I take benedril and it takes care of it, but I have had hepatitus
and I know the itching could be related to liver. the latests visit to
the doc I have urinary problems and pain over a kidney. So they scanned
me and there was nothing. It went away several days later. I've had
irritable bowel that produced no feces, just blood and alot of it. I
lost 20 pbs over 5 mos. with this problem. Nothing but blood. Had three
probes that revealed nothing. I developed Myasplasia, where your throat
doesn't swallow correctly the musculs that propel food and liquid down
down wave. Yep, I've had the bump on my leg checked and it was erythema
Nodosum. I had the xray and definitely have sarcoidosis.
My question is this: Who do I see, what can I expect, what tests
are done, and how is life with it. I am more sure than I have ever been.
They had me diagnosed with fibromyalgia and I know it is so much more
because I am under attack. Please help
*Admin. Message- Try the
Dr. Database: A
worldwide
directory of sarcoidosis
physicians
Name: Mimilll
Email_Address: Bema00@aol.com
From: Indiana
Found_Us_Via: Internet Search
Date: Friday, February 22, 2008
Time: 05:01 PM
Comments:
Hi - This is my first time here. I went to a new ophthalmologist this
week who found nodules in both lower eyelids saying probably
sarcoidosis. Did removal of the right one and sent for biopsy. I also
have Sjogren's syndrome and type 1 diabetes x37 years, so my immune
system is pretty much shot. I have been doing a lot of research on the
internet about sarcoidosis. Anyone have any good sites I can go to to
gather more information. I would greatly appreciate it.
Name: pamela j
Email_Address:
pamboyett@msn.com
From: california
Found_Us_Via: Internet Search
Date: Saturday, February 23, 2008
Time: 11:27 AM
Comments:
I would like to know if there is anyone who has Sarc who has also had a
gastric bypass (weight loss surgery). I have
been on and off prednisone for over 3 years and keep gaining weight. Now
I am having weight related health issues. Sleep apnea, high blood
pressure, gerd to name a few. I was already over weight when I started
on the prednisone. Now I am about 100 pounds over weight. My Primary Dr.
and my Pulmonary Dr both agree I would be a good idea. My Pulmonary Dr.
Is located at Cedars Sinai Lung disease department, I hear that is one
of the best.Because of the Sarc in my lungs I am already short of breath
and being this much over weight is making it harder to breath.
Is anyone else out there having this problem?
Thanks
Name: SANJIB KR MAJI
Email_Address:
skmaji@rediffmail.com
From: INDIA KOLKATA
Found_Us_Via: Internet Search
Date: Monday, February 25, 2008
Time: 05:08 AM
Comments:
X-ray report and CTScan indemnified the multiple glands a not normal
size in join of two lungs. Doctor identified
it may be for Sarcoidosis or TB, not confirm until test by Biopsy.
So, Doctor gives me prednisolone and TB medicine both and
monitoring liver fundability by LFT test. I am
fear about medicine I have no problem now. Any
body please tells me about treatment and how long treatment will be
continued?
Name: Georgie Murphy
Email_Address:
Teddybearlove79@hotmail.com
From: Tracy, Ca
Found_Us_Via: Internet Search
Date: Wednesday, February 27, 2008
Time: 12:20 AM
Comments:
Hi, I was diagnosted 2yrs ago March. I see a lung specialist on a
routine basis. My symptoms seem to be getting worse. I have been
diagnosted with fibromyalsia also. I am in so much pain in my knees, I
have difficulty walking and my lungs burn.Iam also experiencing numbness
in my hands and tingling in my feet. Has anyone else experienced this. I
set up a appt with a rheumatoidologist as my doctor thinks it might be
arthritis. I am getting very depressed and am sooo tired of the pain.
Any suggestions would be helpful.
Name: Kassie g
Email_Address:
voodoo623@verizon.net
From: Philadelphia
Found_Us_Via: Message Forum
Date: Friday, February 29, 2008
Time: 06:27 AM
Comments:
Hi everyone, I thought I would rattle off how
I've been feeling, some times it helps just to get it off my chest. I
try to be positive but my body seems like one big ache, my legs feel
like tree stumps, my knees are killing me, my ankles throb, my feet hurt
so bad I could scream, I have no taste or smell, drenching night sweats
are back, worse than ever. I feel like I could sleep 24/7. I don't know
how to describe this but the hair on my arms stands on end and hurts
like glass shards are coming out from under my skin. Some days I can get
through all this, today isn't one of them. I am sorry I just need to
vent. I have to work to pay health care or I would be home with the
covers over my head sleeping:) Everyone try to have a positive day!!!
Name: Mrs Ishtiaq
Email_Address:
secyishtiaq@hotmail.com
From: Pakistan
Found_Us_Via: Internet Search
Date: Friday, February 29, 2008
Time: 12:06 AM
Comments:
I am suffering from sarcadoisis since 2002.Remained on steroid for three
years. For one year I was in good conditin.Now for last about six months
or so I am on high dose of steroids along with other bronchodailators
and antside effects medicines,no improvement is seen.Iam leading a
miserable life. Can some body help me?
top
March 2008
Name: carole kopera
Email_Address:
carole_angel4@yahoo.com
From:
Found_Us_Via: Not Really Sure
Date: Wednesday, March 05, 2008
Time: 08:16 PM
Comments:
anyone have sarcoidosis in the brain or know of anyone. please respond
what the treatment was and what was the symptoms?
Name: christy
Email_Address:
christydenton2@aol.com
From: ohio
Found_Us_Via: Linked Site
Date: Friday, March 07, 2008
Time: 11:03 PM
Comments:
There is hope for all you new sarcoidians. I was 27 when I was dx. I
have it in both lungs and they continue to get worse. A recent follow up
CT showed a new mas on my right lung. It is not sarcoid. They did a PET
scan and it was normal. A follow CT showed it is still there and I am
worried about it. I am going to go see a new doc. I have it in my spleen
and on my liver as well as possible neuro. Mine is chronic. I was in the
final stages when they found it and that was a crazy thing. "I had a
cough for months and had seen my doc many times. he said allergies.
finally on christmas eve I was to have an elective surg so I called my
OBGYN he ordered a chest xray and within a few minutes they were calling
for a ct News was bad. I ended up having an open lung biopsy. things
were hard to dx. My adrenal glands no longer
function due to long term steroid use. They will never function again.
Good luck to all feel free to email me anytime. christy from ohio
Name: TREECE HARRIS
Email_Address:
sphmerritt@yahoo.com
From: monticello arkansas
Found_Us_Via: Support Group Database
Date: Saturday, March 08, 2008
Time: 05:03 PM
Comments:
i was dx with sarc back 10-07 on my lungs when i went to the hospital
when they thought i had cold. i had been had alot of problems before i
found out what i have now that as i found about this disease that i have
had it for along time without knowing it for along time.
Name: renee' thompson
Email_Address:
david.thompson12@insightbb.com
From: kentucky
Found_Us_Via: Internet Search
Date: Sunday, March 16, 2008
Time: 04:25 PM
Comments:
I was diagnosed with sarcoidosis in 2002, prior to my 32 birthday,
originally I had a persistant cough, that was diagnosed as asthma. After
several trips to the Dr, she sent me for a CT scan, which came back as
possible sarcoidosis. The Dr felt that it wasn't sarcoid, but
coccidiomydycosis. They started me on an expensive drug. I went back for
a follow-up CT scan, and was called by the Dr 4 hours later and told to
report to the hospital because they discovered that it had spread. My
health is better, but there is always the days that I really feel it,
with my breathing and my skin. Always seek a second opion, in regard to
your health.
Name: Lisa brown
Email_Address:
prettylilmamatsu@yahoo.com
From: Texas
Found_Us_Via: Internet Search
Date: Monday, March 17, 2008
Time: 01:45 PM
Comments:
i would like to know if there is anybody out there. thats has this
disease in the liver. an i wanted to know if anybody had kids when they
had sarcoid. because i want to have kids and i want to know the side
effects and will the baby come out alright.
Name: Nicolle Slattery
Email_Address:
nicolle.slattery@achs-inc.org
From: Franconia, NH
Found_Us_Via: Internet Search
Date: Thursday, March 20, 2008
Time: 02:25 PM
Comments:
Hi! I am a 38 year old female dx with sarcoidosis 3 weeks ago. I was
healthy, active and had never had any medical complications until 8
weeks ago. My symptoms started with swollen ankles and then nodules that
appeared all over my calves. After a TON of blood work and then finally
a chest x ray, which led to a CAT scan I was eventually dx with this
disease. I was put on steroids which cleared up my symptoms at one point
temporarily. I just recently finished a two week course of them. I am
looking for other alternatives to the steroids, as the side effects were
awful. If anyone has any suggestions or any information please email me.
I would greatly appreciate any support!
Name: Joseph S.
Email_Address: docker96@yahoo.com
From: Louisiana
Found_Us_Via: Internet Search
Date: Friday, March 21, 2008
Time: 09:21 PM
Comments:
Hi all I started getting sick in Oct. 2005. I started having severe
headaches. I went to my dr. which refered me to a Neurologist. After
many test he told me there was nothing more he could do and refered me
to pain management. I would get and injection in my neck and off they
would send me, only to return in two weeks. It got to a point where it
was not helping anymore so I stopped the injections. I started having
trouble seeing. My wife took me to the eye Dr. He saw swelling and
bleeding behind the eyes. He sent me to a specialist and the specialist
sent me to LSU Shreveport immediately. They did lots of test and found
that I had fluid on the brain. I received a shunt in my brain and I
slowly got my eyesight back. To make a long story short I have been back
and forth for the past 3 yrs. and in July 2007 the Dr. called and said I
had sarcoidosis. I have all the signs, rash, hurting in feet,legs and
now I just found a lump under my armpit. I called the dr. he will take
graphs and check out the lump when i go in May. By the way I was put on
prednisone and I am able to function well, but the minute they take me
off I am down in bed again unable to function. I do know the risks but
as of now there is no other option. My case is
rare because it started in the brain first. I am trying to find anyone
with simmular symptons. God Bless All
Name: Cathey O.
Email_Address: pure150@att.net
From: texas
Found_Us_Via: Not Really Sure
Date: Tuesday, March 25, 2008
Time: 11:49 PM
Comments:
have lung sarc since 2005 and just discovered sarc in spleen. would like
to know if others have the cronic cough and what they do for relief.
Name: Theresa Nolan
Email_Address:
teeteeme@optonline.net
From: water mill, new york
Found_Us_Via: Internet Search
Date: Wednesday, March 26, 2008
Time: 10:00 AM
Comments:
great site, very helpful reading about others who suffer with the same
crazy illness as me. I feel like a hypocondriac sometimes but this site
validates my health issues.
top
April 2008
Name: Janelle
Email_Address:
janelle_esson@hotmail.com
From: Australia
Found_Us_Via: Internet Search
Date: Wednesday, April 02, 2008
Time: 07:07 AM
Comments:
Hi Everyone, I have a question about sarcoids,
my mum has it very bad in her liver with quite a few granulomas at this
stage it doesn't look to be anywhere else in her body yet she is having
all the symptoms as if it were, eg/ eye and chest symptoms etc, can you
get all the symptoms but only have granulomas in one organ?
Many thanks. Janelle
Name: Catherine Grace
Email_Address:
cmgrace@verizon.net
From: Boston, Massachusetts
Found_Us_Via: Internet Search
Date: Wednesday, April 02, 2008
Time: 01:48 PM
Comments:
Name: Mablebg
Email_Address:
mgriffin0630@yahoo.com
From: Fort Worth,Texas
Found_Us_Via: Message Forum
Date: Wednesday, April 02, 2008
Time: 10:44 PM
Comments:
So.......we meet again. Let me re-introduce
myself, I'm a 37 year old black female living in Texas. I was DX'd with
Sarcoidosis in 1998 from a swollen lymph node on the right side of my
neck, it all started with a lingering fever and severe fatigue in all my
large muscles, like in my thighs and forearms and backside as well.
since I had been having fever my Doctor had me on some antibiotics about
a couple of weeks pior to finding the swollen lymph nodes and at a
returned visit he stated that the antibiotics that was given to me a
couple of weeks before should have taken care of this problem as well.
However her sent me to a surgeon to check out and biopsy it. it was
scheduled and about a week later I was told that I have Sarcoidosis, a
terrible word a word that I had never heard of before, it sounded so
foriegn to me, allmost as if I were going to die tomorrow. "SARCOIDOSIS"
and then was sent to a lung specialist which also found little
granulomas in both lungs. I was on a tailspin by then. I was
hospitalized due to a lung infection and they performed a exploratory
surgery, it was also found in my spleen,liver and bone-marrow through a
bone-marrow aspiration (which was painful)in itself. Now to catch you
up-to-date in 2000 I had a brain tumor removed due to Sarcoid, in 2002 I
had some granulomas appear on my left kidney and due to all the pain it
was remove, only 1/4 of my left kidney was removed due to a cluster of
granulomas that had accumlated on it, then in 2003 my gall-bladder was
removed due to again the granulomas which in layman's terms I called
them tumors because that's what mine looked like, just like someone had
come along and sprinkled chunky sea salt on my organs. but their is some
good out of this. my lungs/liver has been in remission since 2003 the
only pain I continue to have is involving my enlarged spleen and my
bone-marrow, which causes my joints and muscles to spasm as well as my
spleen contracting/spasms from time to time. but by the grace of god I'm
still here, here for a reason. I don't ask questions I just keep on
living. Another thing I wanted to let everyone know that as far as
Social Security goes, I applied over the phone and never once enter a
Social Security office and was approved for my disability the very first
time I applied. I applied over the phone and was given a point person to
talk to a send all required info to and that was it, atleast in my
situation. I guess I had god on my side....to him be the glory. if I can
be of any assistance to anyone or someone just wants to become pen-pals
I would love nothing more. We need to get the word out somehow.
I forgot to let everyone know as far as my meds I take pred. 40
mg daily,protonix 40 daily, I do see a pain specialist for my pain
management. sometimes I have to take some Ambien 10 at bedtime to help
me sleep. sorry so long if you like email me anytime and I do return all
emails GOD BLESS US ALL
Name: Denise Jones
Email_Address: levi0874@aol.com
From: Ohio
Found_Us_Via: Internet Search
Date: Thursday, April 03, 2008
Time: 09:56 PM
Comments:
Hello. I have been recently diagnosed with Sac. But in all reality i
have been having many symptoms now for almost two years. When I first
complained to my doctor i had them totally confused and after blood test
that came back negative he came to the diagnosis of anxiety and
depression. I was so upset because I have night sweats, flu like
symptoms, eye pains, joint pain, chest pain, heart palpatations and
arythmia problems, and problems swallowing near the bottom of my
esophagus. I finally had a granuloma removed after a year and a half
because they thought the lump was because of depression and anxiety. The
surgeon I went to is responsible for clueing in my doctor what was going
on. I am so upset because all of my symptoms just progressively are
getting worse and if my doctor had taken me seriously two years ago I
wonder if it would have progressed this far. So now I am on 40mg of
prednisone every other day with no improvements and I have to wait and
see what happens next. I do have several lymph nodes swollen in and
around my lungs also. which I can tell are getting bigger because of the
pain and the swallowing problem. I am so glad that this forum is here
and as i read everyones cases I truly know what it feels like and the
knowledge that I am not alone.
Name: deborah rogers
Email_Address:
deborah20005316@yahoo.com
From: myrtle beach south carolina
Found_Us_Via: Internet Search
Date: Friday, April 04, 2008
Time: 10:17 PM
Comments:
i have been dealing with this for 5 years. i have been on predisone for
that long. i have been through various pulmonary doctors but i still
dont understand the diease. i feel like i dont know what i am dealing
with. my children dont know enough and i dont know how to explain how
serious this is. my mother died with this , i have a cousin who is in a
wheel chair. i think it started with a tumor to the brain,my mother
sister and brother has it. i am so afraid of this because i dont know
what i am dealing with or how many of the things i go through are
related to this. my eyesight is not the best right now. i just went
through a bloodclot to the lungs. can somebody help me understand what i
am going through. i cant aford a doctor like i need but i pray that one
day i will understand something i been battling with for 5 years are
more. help me somebody please thank you. deborah
Name: Nikki S
Email_Address:
mnseale@earthlink.net
From: Harrison, Michigan
Found_Us_Via: Internet Search
Date: Saturday, April 05, 2008
Time: 08:48 PM
Comments:
Hello everyone, I have sarcoidois of the lungs. I found that out when I
went to the E.R. this past October when I was having a lot of pain in my
shoulder. I was told that I had bursitsis and after a x-ray sarcoidosis.
I was then told to go and see a Pulomoligist. After seeing him I had to
have several more tests done. They also found out that I have asthma. I
had to have a open lung biopsy done on January 2, 2008. That was the
time that they knew for sure that it was sarcoidosis. I was put on 40mg
of Prednisone and now am down to 15mg. I put on 25 pounds of weight
since I started that prednisone. I am also having trouble with my memory
since the prednisone. I also have trouble with personality problems. It
is a good thing that my husband loves me as I know I make it awful hard
on him at times. Just a couple of weeks ago I started to having pains in
the middle of my chest. I am having them right now and let me tell you,
it hurts really bad. I don't know if it has anything to do with my heart
as my face color doesn't change during the pain time. I have had pain in
my sides where the kidneys are, don't know what the cause of that is
either. I have a constant pain in the upper right part of my stomach.
Pulomoligist said that it was nothing. I have had a problem with
bruising under the skin that I was told was from the Prednisone. I also
have pain in the bottom of my feet even as I sit here at the computer. I
know that it must sound as though I am complaining, but I needed to talk
with someone about what was going on. I know that some people have said
that they are on disibility, but my Pulomonoligist said that I could go
to work. There is no way I could as I can't even sweep my front porch
without becoming out of breath. If anyone out there has any information
that would be helpful to me, please feel free to write. I would also
like to hear from anyone you that would just like to become Internet
Pen-Pals. Thank you for listening to all that
I have written.
top
May 2008
Name:
mariacruz
Email_Address:
jc1921@yahoo.com
From: houston
Found_Us_Via: Internet Search
Date: Friday, May 02, 2008
Time: 05:20 PM
Comments:
I was diagnosed sacoidosis lun, and sking too.I am feel sad some body
can tall me how this problem came in?
Name: Selaine
Garcia
Email_Address:
jetjaguar999@yahoo.com
From:
Found_Us_Via: Internet Search
Date: Sunday, May 04, 2008
Time: 01:59 AM
Comments:
Hello All.I have Sarcoid. I was told about it after having a brain tumor
removed in 2005.My surgeon was wonderful. I was put on several meds. saw
what felt like a million dr's.I 2 was put on the steriod PREDNISONE by
these dr's only to find out i was allergic, they only added to my
medication list. Needless to say this was the scariest time of my life
seems like dr's like pumping you with meds they feel that's the only
answer 4 everything instead of knowledge. this troubles me because they
seem to try and play God here are just some suggestions i have. 1 make a
medical notebook, ex.marbel) write down all your questions for all the
dr's you need too see, write the answers down in that notebook2 share
those thoughts with all your dr'r.3 make sure you get copies of all lab/mri's/cat
scans and any other reports you havethis helps you feel like you have
some control over what you have learned thus far because you are
prepared too share additional info with all your dr's.if you don't
understand something KEEP ASKING don't be afraid to be a PAIN! this is
your life we are talking about(alot of the times these dr's learn by
trail and error)they seem to clump all patients together instead of
treating us as individuals.tell them what has worked for you in the
past.what hasn't. PLEASE ALL OF YOUTAKE CONTROL KNOWLEDGE IS
POWER!!EMPOWER YOUSELVES! If you have any questionsgive me a shout.i am
38 years youngmother of 4.
Name: TRAE
FULL
Email_Address:
WTFULLMORE@GMAIL.COM
From: WESTERN US
Found_Us_Via: Internet Search
Date: Tuesday, May 06, 2008
Time: 04:40 PM
Comments:
I WAS RECENTLY DX'D WITH SARCOIDOSIS. I WAS WONDERING IF YOU ALWAYS HAVE
TO HAVE NODES, ODULES AND TUMORS BIOPSIED AS THE APPEAR?
End of new messages
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