December 2008
Name: Phoebe
Email_Address:
littlephoebs@yahoo.com.au
From: Hobart Tasmania
Found_Us_Via: Internet Search
Date: Wednesday, December 03, 2008
Time: 09:08 PM
Comments:
I was diagnosed with Sarcoid around 1999 I think when I was 12 years
old. I first had problems with my eyes and all most went blind from miss
diagnosis from a local doctor, after many blood tests and different
treatments I was told i had saracoidosis, They sent me off for more
tests after the diagnosis was made as this disease was at that point
uncommon in children. They discovered I had an abnormal amount of lymph
nodes surrounding my heart, this was causing me to have quite sever
chest pain. My eyes were treated and recovered ok from that (except for
a random mild flair up last year i am now 21 so i though this was
strange) I have not had a check up or any tests done for years but I am
now concerned some of the things i have grown used to in day to day life
like sleeplessness, chest pain, fatigue, bone and muscle weakness and
shortness of breath while exercising, may actually be symptoms of the
condition that need to be monitored. I was a smoker when i was diagnosed
(yes at 12 years old this is very bad) but have since given up in the
last 6 months and am now finding the chest pain is a bit more frequent
and my sleeplessness has increased greatly. Do you think i should go and
get a check up, or am i just being a worry wart? I am also concerned
with the lack of interest from my current doctor, should I be concerned?
Name: Tiffany
Email_Address:
tspiridakos@cao.net
From: Rhode Island
Found_Us_Via: Internet Search
Date: Thursday, December 04, 2008
Time: 02:56 PM
Comments:
Hi, My father has been dealing with the disease now for 5 years. This
year it has rapidly spread into both of his eyes causing almost complete
blindness. Doctors in are area of the country seem confused about this.
However sacroids in the eye as well as other organs is common. Does
anyone know a treatment for this? They want to use kemo therapy?
Name: ericka ad
Email_Address:
spiceyadams@yahoo.com
From: texas
Found_Us_Via: Linked Site
Date: Saturday, December 06, 2008
Time: 12:25 PM
Comments:
Hello, I was diagnosed with muscular sarcoidosis, and recently was
informed that it is also active in my parotid and lacrimal glands. (salavery
and eye) I have joint and muscular pain fatigue and i have found that
since the winter is coming in, i get a cough and start to feel sick.
Then my pulmonologist has to keep me on antibiotics. My concern is the
long term predinsone taking. I don't want other issues. has anyone had
other problems after takeing high dose steroids. When i start to feel
down I just sit and pray. We all need to stand on faith that they will
find a cure for us. " We have sarcoidosis, don't let sarcoidosis have
us" my prayers are with each and everyone of you. I am underinsured and
it is hard. I have applied for disability. you all have Blessed Day!!!
Name: Holly Milford
Email_Address:
toddmilford@comcast.net
From: Independence, MO
Found_Us_Via: Internet Search
Date: Sunday, December 07, 2008
Time: 09:08 PM
Comments:
I have had Sarcoid for about 5 years, dx for 3. I am recently having a
flare up and was wondering if anyone else has experienced lumps just
under the skin on your hands and arms? It seems as though I have a new
one every day! Most are small little lumps, some harder and bigger than
others and they are painful to the touch. Would love to hear from anyone
who has had this and also I would love to hear from people who are
taking remicade or humira for the disease.
Name: pamelaa
Email_Address:
armspal47@gmail.com
From: hemingway s.c
Found_Us_Via: Internet Search
Date: Wednesday, December 10, 2008
Time: 10:30 AM
Comments:
After getting sick last year with a cough that lasted 3 mths. I went to
the doctor and he gave me something to suppress the cough. Well my eyes
began to swell almost swollen shut. I husband toke me to the ER. WHERE
they said I felt I had sacriod. I later learned that my sister also has
this problem. anyway I was diagniosed last month with sacroid and it
only seems that the health issues are only starting. i fell and know i
have problems with mt legs. The sweelling in them will not go down.
Name: lorretta a walker
Email_Address:
lorrie@frontiernet.net
From:
Found_Us_Via: Internet Search
Date: Friday, December 12, 2008
Time: 08:46 AM
Comments:
I have sarcoidosis of the skin. I have nodules (bumps) under the skin in
my arms and buttocks. Except for my left arm, the nodules under the skin
are not that painful. I take Plaquenil 2oo mg daily for treatment, as I
do not want the Prednisone. Stay strong.
Name: Doris McCutcheon
Email_Address:
dmccut3914@aol.com
From: Junction City Oregon
Found_Us_Via: Internet Search
Date: Friday, December 12, 2008
Time: 03:40 PM
Comments:
I was diagnosed with sarcoid 2 years ago from a skin biopsy. Chest
x-rays showed lymph node involvement. I had also been having night
sweats, weight loss and extreme fatigue. I also started to have bloaters
in my left eye. Everything cleared up within 2 months of diagnosis and I
thought great, I'm one of the lucky ones. But now I have pain back in my
chest, my ankles, knees hurt constantly and the floaters in my eyes are
much worse. I have never taken any medications for this other than
Alleve for my joint pain. Has anyone else had floaters as a result of
the sarc? How about the joint pain? I welcome any communication as I
feel that my doctors aren't telling me enough. Most of the info I've
gotten has been from internet searches.
Name: Arlyne F
Email_Address:
messengr61@aol.com
From: suffolk county, New York
Found_Us_Via: Internet Search
Date: Saturday, December 13, 2008
Time: 05:38 AM
Comments
My husband was diagnosed with sarc about 6months ago. It is progressing
rapidly and He is being affected much too quickly for our liking...I
know I don't have to go through the whole story, so I am here looking up
the cpk's and adolase #'s again..They continue to fluctuate, however now
His legs abd muscles have been extremely painful and the #'s are high
once again...I like to do all my own research as well as the Dr.s. He
sees the group @ Mt. Sinai as well as an entire group on the Island...I
wish all of you Good Health and Peace for the up and coming New Year.
Name: D R Williams
Email_Address:
kiteme2@yahoo.com
From: CHARLOTTE
Found_Us_Via: Internet Search
Date: Thursday, December 18, 2008
Time: 05:43 PM
Comments:
My story, age 32. Calf and right back torso lymph nodes Bio'd, Dx'd
sarcoidosis 2002 at 28. Started with chills, extreme fever, muscle pain,
night sweats, chronic coughing with every color phlem there is, chronic
fatigue("nap to make a phone call" sad but true) feeling good for only
one hour in a day, extreme rapid weight gain 230 to 305 from Prednisone,
extreme rapid weight loss 285-215(people thought I had HIV),I cant
smell, I have crusty nasal passages which bleed when plucked, I cant
taste-no appetite, swollen lymph nodes all the time...especially neck.
After all the different doctors, precriptions, PFTS, X-rays, Bull s#%t
etc,...AND IF ONE MORE DOCTOR RECOMMENDS A DAMN PULMONOLOGIST... I am
now experiencing the facial paralysis. It started with my right eye brow
continually itching, so much that I almost rubbed it raw and the hairs
began to feel like pins in your skin. It then progressed to the fold of
my right eye. I swear it itched so bad I thought I had lice or scabbies.
I only wish. You also feel an spontaneous sharp sting which preceeds the
itching often.... it hurts. After the ENTs, and Opthamologist as always
"didn't see anything" I felt good. Then the right side of my forehead
became numb all the way to the middle of my head. The "pain spikes" I
call them continue as you lose the feeling in your skin during the
progression. The vein on the right side of your temple throbs so much
that you think its going to bust through the skin and just squirt
everywhere. you will massage it to give you relief from the pain and
tinglinging from your face being numb. It has now spread to my right
cheek, right nostril, and right upper lip. which made me get on the
internet to find another doctor. Now I can have neurosrcoidosis also???
Give me a damn break! I swear this is a bad disease and everyone thinks
your lazy or lying... those who supposed to know something, dont know
s#%t yeah your having a flare-up... right doc! Could you complete my
FMLA...Not without having to beg!!! Hey heres the kicker! for you all:
YOU WILL BE DENIED SSD IF YOU MAKE MORE THAN $10,000 IN INCOME THE
PREVIOUS CALENDAR YEAR! ex. I was denied when I first filed, apealled,
denied, appealed and denied again. I did not find that out I until the
judge told me himself in the court room... The SSD lawyers will not tell
you this! ie You will have to quit you job and not work for x number of
years until your claim is accepted. Isn't it ironic this disease only
strikes strong people who are independent and like to do for themselves?
Name: Lisa2009
Email_Address:
goodgurllafara@aol.com
From: Wisconsin
Found_Us_Via: Internet Search
Date: Thursday, December 18, 2008
Time: 09:55 PM
Comments:
I am a 38yr old woman,I have been dealing with the everyday struggles of
living with Sarcodosis and Lupus.I was first diagnosed in 2001,I have
been having troubles with my health on and off but now im finding ways
to fight this horrible disease.It is something that will have you up
today down tomorrow.I have been trying to keep myself healthy by eating
right and taking it easy..Keep God close and have faith things will work
out for all of us that struggle with this disease.God Bless You All
Name: Sally M
Email_Address:
sjaecks5154@charter.net
From: Wausau, WI
Found_Us_Via: Internet Search
Date: Saturday, December 20, 2008
Time: 01:48 PM
Comments:
I writing in behalf of my husband whom has been extremely ill as of
06-15-08. He had become actually quite sick with the low grade fever,
extremely bad headaches to the point he was popping pills constant, flu
like symptoms, confusion to the point he was pulling to our neighbors
drive way thinking it was ours and walking up to the door and at that
point realizing he was at the wrong house. I will never forget the 15th
day of June 2008 my husband was so bad he had no mobility, I had to call
a ambulance to get him off the coach as my mother in law and myself
could not move him. Initially when he was brought into the ER at a
hospital to this day I am still not happy with had the gull to say to my
husband stop faking it. I yelled he is not F-ING faking it, could we see
another doctor. Another doctor did come in they immediately thought it
was meningitis, so they did a lumbar puncture, which in total for the
past 6 months and two long hospital stays later has had 9 Lumbar
punctures, 7 Brain MRI's, 1 Chest MRI, 4 Chest CT scans, 4 skin
biopsy's, 1 Brian biopsy, 1 Lung tissue/lymphoid biopsy, multiple blood
draws/tests, 3 EKG tests, 1 EPD EEG test, and multiply chest xrays. His
original pre diagnosis of meningitis was not the case, he actually went
1 1/2 months with no diagnosis at all. He was transferred to the UW
Madison Hospital in Wisconsin there he had been diagnosed with
Blastomycosis. Which they found in his urine hard to believe I know.
Needless to say he had been put through a variety of IV and by mouth
regiments that taking up to 8 hours of my husbands day for the last 2
1/2 months. The day after Thanksgiving my husband and I had to drive
back to Madison which is 2 1/2 hours away from our home for bi-weekly
appointment with his ID (infectious disease doc), MRI of Brain and Chest
and Hearing test. Owe yah forgot to mention due to nerve damage my
husband lost the hearing in his Left ear and partial in Right. While
there my husband was suffering from great nausea. We waited a while for
the! test results once given the all clear we started our journey home.
Not even 1/2 hour into our drive the nurse called and asked us to turn
around, not only did my husband have a bacterial infection in his blood
and urine, the brain MRI showed more lesions on the brain a meningitis
on the back of his brain. Which at least explained the nausea. He put
back in the hospital for the forth time. After many more test to move
this along, not to make light of my husband and our familys journey thus
far, he had the Brain biopsy and Lung Tissue/Lymphoid biopsy, we got the
results from part of them back. He showed granuloma in the lungs. Now to
say the least I am scared. My husband has been assessed many times now
for his mental status and he with the lessions on his brain is very
confused most of the time. I in the process make all decissions
regarding his health care needs. I just really want and need to make the
right decissions here. We have a 2 1/2 year old that is the most
beautiful girl in the whole world. With all the medical expenses I am
feeling very overwhelmed. If anyone is out there that understands I
would really love to hear from you. I love my husband very much and I
want thing the way they were. Thanks to those that let me get this off
my chest.
Name: Gloria Newsome
Email_Address:
Mzbiggredd@roadrunner.com
From: LORAIN OHIO
Found_Us_Via: Online Support Group
Date: Sunday, December 21, 2008
Time: 02:03 AM
Comments:
Hello Everyone. This is MzGloria and I just wanted to inform you as to
why I am always posting these Inspirational messages on the sight. I
have been living with Pulmonary Sarcoidosis since 1995 and I have to
admit it has been a very rough journey. In pain constantly, developing
secondary conditions due to the sarcoidosis, in and out of the hospitals
repeatedly, constant testing, passing out, unable to breath, loneliness,
anger, frustration, weight gain, so many medications that I feel like a
Pharmacist myself, going from doctor to doctor to find the right one and
coming up against doctors who sometimes treat us as if we are not sick
at all, yes it a rough road not travelled well for many of us, and for
many of us with the different varieties of Sarcoidosis we all experience
something different with fighting this disease, but through it all I
discovered that those of in this condition need to have SUPPORT,
UNDERSTANDING, FAITH, INSPIRATION and the ability to know ourselves and
our bodies to know what triggers our flare ups. 2 years ago a very close
friend and loved one passed away and in that moment I felt my life
change, as if apart of me died with them. I felt this spirit tell me to
begin writing as a way of dealing with the pain of the death of my loved
one and my fight with the Sarcoidosis so came my writings. I try very
hard to write about the things that give us all encouragement to carry
on to give us the courage to keep fighting but most of all to let us all
know that we are not in this fight alone. For in this battle many of us
feel alone, as if no one can understand what we are going through. For
me I never really had a support system, many looked at me with
pity...the woman who is always sick. My family stays scared and upset
most of the time and that breaks my heart but the one thing I know is
that I never want to be or feel as though I am a burdens to my family or
anyone else, so in that I know that I have to fight and have faith to
know that my Creator will take on all our burdens and see us through our
battles. And in my words I try to express the same things to you. So as
you read my words which comes from deep in my heart, I pray you all find
the strength and the belief to know you will make it through and that
through your struggles YOU ARE NOT ALONE! I wish you all blessing and
health! Love To You All. MzGloria
Name: gomez12
Email_Address:
svkmr642@gmail.com
From: usa
Found_Us_Via: A Friend
Date: Sunday, December 21, 2008
Time: 10:14 PM
Comments:
nice site and i am happy to be here
Name: Jim Gallahue
Email_Address:
J.gallahue@comcast.net
From: Weymouth, MA
Found_Us_Via: (please select from list)
Date: Tuesday, December 23, 2008
Time: 08:31 PM
Comments:
Have had pulmonary and lymph sarc since 2/1/2000 although I think this
crap all started with a pneumonia that started in April of 1992 and put
me in the hospital for two weeks. Today I was scoped top to bottom by my
gastroentologist. I have had this before and he always has said that he
found a few benign polops and everything was fine. Today, he talked with
my wife and told her he took some polops and some other stuff he's never
seen before and is sending out for biopsies. I have been having pain in
my abdomen and some other stuff I will not print here. We have a good
idea that this is sarc and he is thinking the pancreas. If anyone has
sarc in this area I'd like to hear from you.
Name: Sue Johnson
Email_Address:
johnson2608078@yahoo.com
From: New Jersey
Found_Us_Via: Internet Search
Date: Sunday, December 28, 2008
Time: 12:32 PM
Comments:
I was diag with sarcoid in Oct after being deathly sick for 3 months. My
calcium level was extremely high and my family dr did not know what was
wrong with me. I was finally admitted to the hospital where I was diag
with this disease. I almost died. I was in the hospital for 9 days. my
symptoms included dizziness, confusion, sick in the stomach my bones
hurt terribly and my legs and ankels were swollen. Of course everyone
thought all this was in my head. I have pulmonary sarcoid. I was put on
prednizone which I am now trying to wean myself off. It is also causing
eye problems including blurred vision and eye floaters. I get weird
pains in my hands and feet. And my toes will double over each other and
also my hands get like they are paralyzed for a few min and then it goes
away. I am glad I found this site and if anyone wants to contact me
please do.
Name: Hope Heidenreich
Email_Address:
heidenhope@aol.com
From: Ohio
Found_Us_Via: Internet Search
Date: Sunday, December 28, 2008
Time: 02:37 PM
Comments:
Hi all... Can't remember if I posted here or not... I was pretty much
diagnosed w/ Sarc in Jan. 07-- I say pretty much because since we have
no insurance I didn't have the biopsy done. It started months before
then, buy Dec. 06 I woke up one morning with both my ankles swollen
beyond belief and feeling simply horrible-nothing specifc, just an
overall bad feeling. This went on for weeks. Symptoms would come and
go--trouble swallowing, aches, fatigue, stuffy nose, sore throat, you
name it. Of course all tests came back showing nothing. Then the chest
pain started. It was more of a pressure, but not like something heavy
sitting ON my chest, it felt like something INSIDE my chest pressing
outward. I ended up in the ER where they ran a TON of tests, one of
which was a chest CT and they said probable sarcoid and put me on pain
pills (which I didn't take) and sent me to a pulmo doc, who also ran
tests and said sarc but he wanted to do a biopsy. we told him no, partly
due to not having insurance but also because we try not to take meds
unless absolutely necessary--we prefer the natural, holistic
philosophies. I started researching on my own and through trial and
error, have found what works for me. I have been relatively symptom
free, but occasionally I do have a flare-up that mostly is chest pain,
heart racing, fatigue and an overall sense of not feeling well. I
encourage everyone to become skilled at listening to your body--it can
make such a difference. Feel free to contact me if you'd like to email
with someone else who knows what you're going through. Keep the faith,
whatever yours may be.
Name: catherine
Email_Address:
katies3babes@yahoo.com
From: Indiana
Found_Us_Via: Internet Search
Date: Wednesday, December 31, 2008
Time: 10:18 AM
Comments:
I am 33 and am having a few symptoms of Sarcoid. My ACE level is high. I
am wandering if it would have been higher if I was not already on
Methotrexate. I have not been "diagosed" yet my doctor wants me to see a
pulmonary doc at a sarcoid clinic. Do any of you have lumps in your
legs, Severe leg pain?? I had never her of this disease before last
week.
