top
January 2009
S.O.S Wishes Everyone A
HAPPY, HEALTHY NEW YEAR!
Name: L.ouesta
Email_Address:
louesta@hotmail.com
From: Brooklyn New York
Found_Us_Via: (please select from list)
Date: Thursday, January 01, 2009
Time: 01:34 PM
Comments:
Hello everyone, I have been living with Sarcoidosis for the past six
years. In the beginning I had bells palsy and after that I developed a
rash on my face, in the corners of my eyes and my nose, which have since
become worse. I also have sarcoid in my eyes, I am now blind in my right
eye. My doctors have tried everything and the only thing that seem to
help is prednisone. My joints hurt so much sometimes I can't walk
because of my hip. I get up ever morning and live each day because I
can't give up, I have too much to live for. I have three beautiful
children who needs me, so I can't give up, with every breath I fight
this, whether I am in pain or not.
Name: Gail Watson
Email_Address:
eyssogreen@aol.com
From: Sacto. ca
Found_Us_Via: Internet Search
Date: Sunday, January 04, 2009
Time: 09:37 PM
Comments:
I have Neurosarcoidosis, Diabetes, and reg. sarcoidosis. I also have a
right upper thigh that goes from totally without feeling, to hot or cold
flash feelings, or feelings of stabbing pain, or like bees are stinging
me. I have been expecting an eruption as I thought it was Shingles, but
so far, the condition is chronic, (about a month or more) and it doesn't
seem to be letting up a bit. I have been putting a pain relief
(arthritis type rub) on it, and heat which keeps it from making me
scream....lol, but it isn't an answer. Is it a common condition? Is it
neuropathy??? WHAT IS IT? Thank you, Gail from sacto. Ca.
Name: BJ in Hong Kong
Email_Address:
bwjackson@hotmail.com
From: Hong Kong
Found_Us_Via: Internet Search
Date: Friday, January 09, 2009
Time: 07:51 PM
Comments:
Should I undergo treatment. 37yo white male, just diagnosed with Stage 3
pulmonary sarcoidosis. No symptoms, and lung function is fine. Am in
Hong Kong, where incidence is low, and my specialist has little, if any,
direct experience, but he recommends steriod treatment. Am obviously
concerned about side-effects of steriods. Spoke to a friend who is an
oncologist in New York and he spoke to someone who is very experienced
in the treatment of sarcoidosis who advises to not treat based on my
lack of symptoms and normal lung function. Interested in views and
advice. Thanks.
Name: Helen Laing
Email_Address: h.laing@att.net
From: Cincinnati, Ohio
Found_Us_Via: Internet Search
Date: Saturday, January 10, 2009
Time: 07:16 AM
Comments:
My husband was diagnosed with sarcoidosis in 1999 after months of
feeling ill, sweats, breathing problems, extreme fatique. He was on
steroids, gained tons of weight, then on methaltrixate until 2003 when
the doctor said he was in remission. Fast forward to January of 2008 -
had catscan because of blood in urine (we still don't know where that is
coming from after multitude of tests) - showed bone lesions all over the
body. Sarcoid doctor said that sarcoid doesn't do this. After going to
the emergency room in October of 2008, they tested him for multiple
myeloma, bone cancer, etc. They now have said he has skeletal
sarcoidosis which occurs in less than 1% of patients. It is over his
entire body (including brain) - has short-term memory loss but is on
methaltrixate again and it seems to be helping. Has anyone else had
skeletal sarcoidosis that can help? We switched doctors and the new one
seems to be staying on top of everything but has anyone else had the
memory loss?
Name: David Bryant
Email_Address:
d_w_b73@yahoo.com
From: El Dorado,KS
Found_Us_Via: Linked Site
Date: Monday, January 12, 2009
Time: 06:26 PM
Comments:
I was diagnosed with sarcoidosis, I was wondering that once you are
diagnosed with type 1, how long is the time frame usually before you
reach the type 2. What factors increase this? I have an old x-ray that
looks identical to the one they just took and justified the ct scan for.
If both xrays look the same, would it be safe to say I probably had
sarcoidosis 4 years ago too. It just was not caught and did not get
diagnosed because that was not what they were looking for, they were
looking for broke ribs then instead of sarcoidosis.
Name: Carlotta McCormick
Email_Address:
irisnutt@yahoo.com
From: Virginia
Found_Us_Via: Linked Site
Date: Thursday, January 15, 2009
Time: 10:28 AM
Comments:
Hi! I was diagnosed with pulmonary sarcoidosis in October 2008, after
being sick since June 2008. I had the constant cough, aches, etc., and
was diagnosed with strep, bronchitis, colds, etc., and went through alot
of meds. I started having allergic reactions to all of my meds,
including cough medicines, and then one day I got the butterfly rash on
my face. My GP started talking about lupus, but referred me to a
pulmonologist while waiting for the blood test results. The
pulmonologist ran some CT scans, and came back with either lymphoma or
sarcoid. He performed the bronchoscopy and punched out to my lymph nodes
to do biopsies, because they were 6 times their normal size (eggs
instead of beans). I had most of the symptoms of sarcoid, including
difficulty breathing, pressure in chest (like pleurisy), butterfly rash,
wheezing. They put me on 60mg of prednisone for 3 months, and I got
almost every side effect known. Doc said it was better to take the pred
than some of the other drugs, less side effects. I had swelling,
movement of fat deposits (to throat and back of neck), thin skin, blood
break-through to just under skin, 2 days of flying high with no sleep,
and then crashing to recuperate, etc. Finally another CT scan showed
that the "episode" was over, and they started bring me off of the pred
slowly. I told the pulm about my nosebleeds--3-4 each day, and he found
out that I had impacted sinusitis, symptoms covered by the pred. He gave
me a strong antibiotic which has cleared most of the virus. HOWEVER, I
still have many of the symptoms of other types of sarcoid, but can't get
anyone to believe me. I have memory loss (truly, I can't remember
anything anyone tells me, much less what I need from the store), my
knees/back/bones ache to the point I can barely walk at night, my ears
sometimes ring and go shut alot, my sinuses are still problematic, and I
still have the ongoing cough. Also, before I was diagnosed with sarcoid,
I had major eye problems and ended up with contacts/glasses. I had eye
surgery 5 years ago, and still had perfect vision until January last
year when it seems to be disappearing quickly. The eye doc thought I
would need reading glasses because I'm 45 and he expected it. Imagine
his surprise when it was my distance vision that was going away quickly.
I developed alot of floaters, flashes of light, and seeing dark spots
move out of the corner of my eyes that just weren't there. None of my
docs think I have sarcoid anywhere else--just lungs. Does the cough ever
go away? I've gotten used to it for the most part, but it's driving my
husband crazy. He says it hurts his ears when I cough. How can the
episode be better, but the symptoms still be here? I still get the
butterfly rash on and off, and each time it shows up my face peels
constantly as if sunburned. DOES IT GET BETTER?
Name: Stephanie
Email_Address:
stephanie_akers2000@yahoo.com
From: Pecks Mill , WV
Found_Us_Via: Support Group Database
Date: Thursday, January 15, 2009
Time: 03:51 PM
Comments:
I am a 30 yr old who was recently diagnosed with sarcoidosis. Just
really looking for any help as far as what to expect or how others were
diagnosed. My diagnosis has been little over a year coming. It started
with a pulmonary embolism with bronchitis and pneumonia. A year later I
was still having problems and it progressed with chest pain and
shortness of breath and I finally broke down and went to the dr, and was
diagnosed with plurosy(questionable spelling). After following up with
my family dr, he did a chst x ray and found "spots" he sent me to a
pulmonoligist and I had a CT and a Broch with biopsies, and all the
slides came back positive for sarcoidosis,, he has started prednisone
treatment and I guess question is what is next?
Name: G.Parrish
Email_Address:
parrishg@mdainc.com
From: Atlanta
Found_Us_Via: Internet Search
Date: Saturday, January 17, 2009
Time: 11:56 AM
Comments:
I was diagnosed with sarcoid so long ago I don't even remember. I was
diagnosed by a Retina Specialist and later confirm by Pulmonologists. I
had the dry cough that lingered on forever but I am not sure what other
symptoms I might have had except in my eyes. The swelling in my eyes
would get very bad at times and I would take steroid shots in the eyes
to keep it under control. I do have huge floaters but currently the
sarcoid is inactive in my eyes. The complications I am dealing with is
this: I also have kidney cancer. They removed my kidney but it spread to
my bones and my lung.They really can't tell, in my lung, where the
sarcoid ends and the cancer begins. I have had rounds of chemo but it
doens't seemed to have helped. What I need to know is how can the docs
tell if it helped if they can seperate the cancer from the sarcoid? How
do they even know how big the tunmor is? IS THERE ANYONE OUT THERE THAT
HAS PULMONARY SARCOID AND CANCER?
Name: SusanSIL
Email_Address:
tedsmom65@aol.com
From: Illinois
Found_Us_Via: Internet Search
Date: Saturday, January 17, 2009
Time: 03:48 PM
Comments:
In late 2005, it was discovered one lung with many granulomas & had open
lung biopsy performed with inconclusive results. Regular CT scans have
been performed and now have granulomas in both lungs with multiple
densities identified. My pulm. dr. has pre-diagnosed me with
sarcoidosis. In late 2008, I had a CT & MRI of brain done and results
show multiple white matter lesions which are associated with MS. I've
seen a MS specialist and would have diagnosed me with MS until I
mentioned sarcoid to him. He scheduled more blood tests and a MRI of
neck & spine and suggested a spinal tap, which i have scheduled for next
week. In the meantime, I was able to make an appointment with a sarcoid
specialist at the Univ of Chicago Hospital. My current dilemma is
whether it's necessary to have the spinal tap performed before I see the
specialist, if at all. I'm pretty sure, from what I've read, the spinal
tap cannot conclusively diagnosis either. Do any of you have input on
the spinal tap test? Both diseases are very similiar but I don't possess
a lot of the symptoms for sarcoid except the achy, flu-like symptoms and
fatique at end of day. Otherwise, breathing feels normal (and improved
since I've cut smoking back using Chantix from 1 pack/day to 3 cigs a
day). Any advice, anyone? thank you
Name: Sonya Jones
Email_Address:
s_jones71_07@sbcglobal.net
From: Indianapolis
Found_Us_Via: Internet Search
Date: Monday, January 19, 2009
Time: 07:41 PM
Comments:
I was diagnosed with sarcoid November 2004. I was immediately given
Prednisone, which gave me several unwanted side effects. I was told my
pulmonary physician that I needed to continue taken the steroids and if
I had any problems swallowing to come back and see him. I stopped taking
the steroids and as of this year I had a very bad flare up. I lost my
balance and now have trouble hearing. I have constant joint aches. I
went back to the doctor and was placed back on steroids at 40 mg a day.
I also take prenatal vitamins, Klor-Con for my low potassium, lisinopril
for high blood pressure and Furosemide which is a water pill. The doctor
took me off work indefinitely. I wanted to know if my balance will come
back? I walk like I'm just learning. It is very depressing. I have
worked since I was 14. I am 37 now and don't have the finances to miss
any more work. I was given an MRI last week and will receive the results
soon. The doctor states that it can be neurosarcoidosis. Is there any
other type of medication that can be given to me? The steroids make me
fell worse and it doesn't help the pain.
Name: David Bryant
Email_Address:
d_w_b73@yahoo.com
From: El Dorado,KS
Found_Us_Via: Internet Search
Date: Monday, January 19, 2009
Time: 09:06 PM
Comments:
As I said earlier, I was diagnosed with Sarcoidosis just this last week.
I have started taking 60mg of Predisone and it seems to have relaxed the
cough for me. It too has eased my breathing problems some. I still have
the cracking sounds from time to time and some gasping. I am said to
have type one Sar. but I do really believe I am at least type two from
my view. I live in Kansas and am in search of any Specialist Dr.s in the
area if anyone would know please help. I am useing the VA Medical Care
and they are really pretty limited to their knowledge of the condition
it seems.
*Admin. Message-
Please try our
Dr. Database:
The
Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid
specialists in your area.
Name: Steven Clark
Email_Address:
sclark@scstarnet.com
From: Utah
Found_Us_Via: Internet Search
Date: Wednesday, January 21, 2009
Time: 09:00 PM
Comments:
Hi, my name is Steven. I was just diagnosed with sarcoidosis. I had a
cough for about three months. I am 45 years old. Doctors did a chest
xray then ct scan then lung biopsy. I was beside myself. Till the biopsy
came back I was beside myself because they said I could have cancer.
About 4 days later they told me it was sarcoidosis. Now I have a nice
hole in my neck and swollen lymph nodes and nodules in my lungs. My
lungs have always been good. I have had gout flare ups for about 15
years. could this be part of the same? I have never even heard of this
disease. I wonder what's next. Does anybody know if this is something I
could have already had for a while. I have read quite a bit on the
internet. I have been sent to a pulmonologist tomorrow. God bless.
Name: James Burke
Email_Address: ds842@aol.com
From: El Paso
Found_Us_Via: Internet Search
Date: Thursday, January 22, 2009
Time: 06:16 PM
Comments:
I was diagnosed with Sarcoid in January 2009, since May 08, I started
going to many specialists cause of all my ailments. My saliva ducts
stopped working, eye inflamation, loss of memory, enlarged lymph nodes,
headaches, chills, fatigue, dizziness, and body aches. I wish I could
say I just got this, but believe I have had this in a lesser degree for
past thirty years as I have been hospitalized for unexplained fevers and
swollen legs.My RA doctor has put me on Hydroxychloroquinne 200mg twice
a day in July08, which really for malaria, which I don't have, as he
thought I had some type of Autoimmune disease. But it does seem to be
slowly working, my enlarged lymph nodes are shrinking 30% in six months
and do have less chills. He also has me on Co Q-10 and Omega 3 Fish Oil,
the chest pains have almost gone away, and overall, some days I do feel
I have more energy. But I do have some days where I spend all day in
bed.
Name: Chris Piccott
Email_Address:
chrispiccott@hotmail.com
From: New Brunswick, Canada
Found_Us_Via: Internet Search
Date: Thursday, January 22, 2009
Time: 09:11 PM
Comments:
Hi: Just before having heart work done in the early 80's, the chest
x-rays showed TB or Sarcoidosis, as it turned out it was Sarcoidosis.
Throughout the years I've had aches and pains in which couldn't really
be explained, but were treated as individual items. Two weeks ago I was
reading some info my wife found on the internet regarding Sarcoidosis
and its symptoms. I then went to my doctor and he said some things may
be a result of this disease, and the rest were just coincidence. Funny
enough, a day after all this I finally found a seventy two year old lady
that used to run help groups for Sarcoidosis people here in Saint John,
new Brunswick, Canada, and we reviewed all my aches and
pains....eighteen problems I am going through she said were related to
this evil disease. Just a few of them: left arm goes completely numb,
migraines, bad sore knees, heart palpitations, racing heart, skipped
beats, out of breath after just two short flights of stairs, takes
sometimes ten minutes to catch breath, red patches on face area, dry
cough, always clearing throat after eating (like there is something
there), burning feet, dry eyes, lights and sun are to bright (almost
hurts), Irritable Bowel Syndrome, diagnosed with asthma (but it is
probably Sarcoidosis), did a lung function test last year, lung capacity
down to 74%, depression, and fatigue after something physical. Family is
so important to my wellness state. Life goes on, and on, and on, and on,
god when does it stop. Good luck everyone. If the doctors don't know,
then it's up to us to educate them I guess. Cheers!
Name: Desi Hand
Email_Address: dhand07@aol.com
From: England
Found_Us_Via: Internet Search
Date: Friday, January 23, 2009
Time: 09:40 AM
Comments:
I was diagnosed with Sarcoidosis in August 06 after a biopsey showed I
had the disease and not Lymphoma as I had been previously told. I had no
symptoms at all. I had gone to my doctor in June 06 as I had felt
enlarged lymph nodes on one side of my neck. CT scan show ed enlarged
lymph nodes either side of my wind pipe. I was told by the consultant
that I didn't need any medication. I started to get night sweats and was
very aggitated all the time. I felt the nodes in my neck increased. In
April 08 I was feeling great with no problems I went to see the
consultant and he did a CT scan. To my suprise the Sarcoidosis had
spread to both lungs. Lots of changes in 2 years he said. I still had
above average lung function test results! I was put onto 60mg
Prednisalone which was reduced and reduced. In August I was put onto
Methotrexate this was gradually increased to 15mg one day a week and
7.5mg of Prednisalone daily. I still feel well with no side effects and
I have noticed I cant feel the nodes in my neck anymore although that
side of my neck is still visibly thicker than the other side but no one
notices except me. I am on this medication at this level until October
2009. I have regular blood tests which have been fine. Has anyone else
had this treatment and what was the outcome? I believe my Sarcoidosis
was brought on by stress. I believe I have to keep very fit to keep as
healthy as I can. I wish that the readers of this comment a positive
future.
Name: Tamie OConnor
Email_Address:
tamie50@gmail.com
From: Canada
Found_Us_Via: Internet Search
Date: Monday, January 26, 2009
Time: 07:46 AM
Comments:
I was told I had Sarcoidosis about 4 months ago, after having a ct scan
done for my sinuses. One week later I had a biopsy done on my lymph
nodes, which came back positive. I am having pain in my joints with
sharp pain in muscles and my nose and in around my eyes. The fatigue is
the worst for me, I found I am sleeping like 18 hours a day. I had a bad
flu last April that just wouldn't go away. With it I had chills, night
sweats, fatigue. My voice comes and goes, it can go for a few hours or
for a couple of days. It seems as if it is getting worse, my specialist
doesn't want to give me any meds but I am having a hard time just being
able to the things I would normally do. I had to leave my work. I had
never heard of Sarcoidosis, so now I try to find out if there is
anything homeopathic which can be done.
Name: Steve Johnson
Email_Address:
stevejai2002@yahoo.com
From: Huntington WV
Found_Us_Via: Internet Search
Date: Monday, January 26, 2009
Time: 06:17 PM
Comments:
I was diagnosed with Sarcoid in 1985. The involvement was in my liver
and lungs after a year course of prednisone it went into remission. I
have been having issues with extreme swelling and pain in my hands and
fingers over the last month. I would usually take a NSAID to reduce the
swelling and pain but since I was recently diagnosed with CKD in Nov. I
can’t take those type of medications anymore. Today I went to the
emergency room and the Dr. there told me that my sedimentation rate was
54 and he thinks that there may be more sarcoid involvement. Has anyone
had these type of issues with your experiences?
Name: Jane/of/Monroe
Email_Address:
JaneOmonroe@aol.com
From: Fl
Found_Us_Via: Internet Search
Date: Tuesday, January 27, 2009
Time: 07:39 PM
Comments:
I have a question. I have been diagnosed with sarcoidosis for two years
now and am about to go on my third round of Prednisone (each has been
about six mos. apart). Each round starts at 60mgm, decreasing the dose
every four days until finished. I was told this time I may have to stay
on a low dose. I know each case responds differently, but what is a
common maintenance dose? I find the high dose very disagreeable
especially the insomnia and hair loss. Is it reasonable to give the
maintenance dose a try before asking to try a different med?
Name: shelagh
Email_Address: smstrs@aol.com
From: yorkshire, england
Found_Us_Via: Internet Search
Date: Wednesday, January 28, 2009
Time: 08:15 AM
Comments:
I was diagnosed with sarcoid in 1992; had problems with breathing, joint
pains, fatigue etc etc. Over the years I have had several flare-ups, but
have come through them all more or less in one piece. Recently however,
I have been feeling very odd - flu-ey and under the weather generally,
but what is worrying me greatly is that I am shivering all of the time.
I am not cold, it is just as though I am 'coming down' with something
that doesn't materialize. Does this sound like any sarcoid symptoms
experienced by anyone else? It is very unpleasant, though obviously it
is not painful or debilitating. I would just like to know what is
causing it.
Name: Gloria Parrish
Email_Address:
parrishg@mdainc.com
From: Georgia
Found_Us_Via: Internet Search
Date: Wednesday, January 28, 2009
Time: 03:25 PM
Comments:
Are there others out there who have had more symptoms related to your
vision than those lung related?
top
February 2009
Name: Linda K. Byron
Email_Address:
lkbyron@verizon.net
From: Virginia
Found_Us_Via: Internet Search
Date: Sunday, February 01, 2009
Time: 01:29 PM
Comments:
I have been told that I might have sarcoidososis and the pulmanary Dr.
wants me to have a skin biopsy. My symptoms occured in 2005 and I went
to the hospital and was told I had Transverse Myelitis and then MS. Now
they found nodule in each lung. I've had psoriasis, dermatitis, low
thyroid and feel pain in right side under breast. I walk with a cane due
to muscle weakness. I'm so tired all the time, depressed, have joint
pain and don't know what to do. I sometimes look at the cross and see
Jesus suffer so why should I complain.
Name: Doreen Scott
Email_Address:
doreenscott125@comcast.net
From: Florida
Found_Us_Via: Online Support Group
Date: Tuesday, February 03, 2009
Time: 05:29 PM
Comments:
I was diagnosed with Sarcoidosis in January 2007 but before that I was
having symptoms and not know what it was. I was on prednisone for one
year and everything was fine. Now I am anemia, lost weight and having to
get procrit theraphy My advise is to you all drink alot of fresh fruit
juice, take multivitamins, also go to the herbal store tell them your
problem and I am sure they will find something to make you feel better.
This is what I did and it helps me with coughing and all the other
symptoms that come along with Sarcoidosis. God Bless you all. Love Bye
Name: Debbie Bassil
Email_Address:
ddbno@hotmail.com
From: New Orleans
Found_Us_Via: Internet Search
Date: Tuesday, February 03, 2009
Time: 09:17 PM
Comments:
My husband has sarcoid of the lungs for 6 years. He continues with
Advair and prednisone. Does any one know if general anesthesia will
exacerbate his symptoms? He may need cervical fusion. thank you in
advance for any input.
Name: Carla Bly
Email_Address:
carlably2007@yahoo.com
From: Eldon, MO
Found_Us_Via: Internet Search
Date: Wednesday, February 04, 2009
Time: 04:44 PM
Comments:
I am a 47yo white female diagnosed with sarcoidosis last May. Started
with the shortness of breath, severe headaches, aches, etc. It has
flared up alot but they don't think I need steroids, say the side
effects are worse than the disease, so my question is...do we just
suffer???? And is ANYONE looking into a cure??? I also get the rash on
my face ALOT and I am just exhausted all the time. I guess I am just
really relieved to find some of you who know how I feel.
Name: James35
Email_Address:
jaybbowjay@yahoo.com
From: Taylor,Mi
Found_Us_Via: Internet Search
Date: Thursday, February 05, 2009
Time: 10:52 AM
Comments:
Hello I havent been actually diagnosed with sarcoidosis but have had
symptoms such as swollen ankles, breathing and swollowing problems,
small pinpoint ulcers on my shins, fatigue, night sweats sometimes, and
recently back pain. I also have had kidneys ake of and on since about
2003. I link the sickness to possible exposure to asbestos while
remodeling a house. I am married with 2 daughters. Me my wife and oldest
daughter were exposed and my youngest daughter wasnt born yet. I have
had to watch them with symptoms also. My older daughter has been very
sick with swollen glands off and on, fatigue night sweats and more
symptoms also. I have found that a healthy diet balanced with protein
and moderate carbs helps alot. For me if I cut out junk food and stick
to natural foods my symptoms decrease and almost vanish. Although it is
verry hard to eat this way for me because my craving for sweets has
increased tremendously the past few years.
Name: Kevin C.
Email_Address:
kpconger@centurytel.net
From: Wisconsin
Found_Us_Via: Message Forum
Date: Saturday, February 07, 2009
Time: 05:15 PM
Comments:
I was diagnosed in 2006 and have been told that I am in remission.
Although I still have all the symptoms that I always had from the
fatigue to the body pain, to the sick feeling and swelling in my legs. I
would like to here from others that have been told this and feel like
nothing has changed. Also if anyone knows of a good Dr. in Wisconsin let
me know cause there aren't any that seem to understand or want to
understand what I'm telling them. If its not in there medical books then
it must not be a problem.
*Admin. Message-
Please try our
Dr. Database:
The
Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid
specialists in your area.
Name: Wendy Lykopoulos
Email_Address: ARIANNA@aol.com
From: Florida
Found_Us_Via: Internet Search
Date: Tuesday, February 10, 2009
Time: 10:38 PM
Comments:
I was diagnosed with Sarcoid in 1989 with erythema nodosum and a lung
biopsy. It resolved with high does of Motrin within 6 months. This past
year (20) years later I was diagnosed with bilateral carpal tunnel and
now have had left sciatic pain for the past 4 months. My ankles and feet
are stiff in the morning and slowly loosen up after a couple hours of
moving around. I feel like an 80 year old and I just turned 51 - there
is no erythema and on my labs have been normal - could this still be
Sarcoid related? Does any else have a similar story? Thanks Wendy
Name: Tasha Kenon
Email_Address:
tashakenon@yahoo.com
From: Mt. Olive, N.C.
Found_Us_Via: Internet Search
Date: Saturday, February 14, 2009
Time: 12:49 AM
Comments:
I was diagnosed with sarcoid 6yrs ago and it was scary especially the
fact, no one knows where it comes from or how it even started. Not
knowing I would live to see my daughter first birthday was the scariest
of all. People seem to think you're faking when you're in pain and think
you'll get over it, I wish it was that simple. I've had problems with my
eyes, sores in my head, joints aching and that's to list a few. I just
thank God I'm alive and maybe one day I'll be able to get off Predisone
for good. I've read alot of stories and my prayers go out to those who
have it and those who have to see their love ones go through it. Just
know you're not alone. May God bless each one of you.
Name: TriciaW
Email_Address:
latward@gmail.com
From: north Carolina
Found_Us_Via: Internet Search
Date: Friday, February 13, 2009
Time: 04:31 PM
Comments:
In 2003 I went for sinus surgery and was diagnosed with sarcoidosis of
the nasal passages. I have been having increasing joint pain and no
energy. I am almost totally disabled Doctors have been treating with
steroids which I do not tolerate well. Anybody have nasal sarcodosis.
how are you being treated?
Name: DFluellen
Email_Address:
dorothyfluellen@hotmail.com
From: Korea
Found_Us_Via: Internet Search
Date: Thursday, February 19, 2009
Time: 08:36 AM
Comments:
My husband was diagnosed with Sarocidosis in 1975 in Europe. We live
with the disease for 30 year s together as man and wife until the
sacoidosis got worst in 2002. My husband was diagnose as Stage 4 from
his Radiogical test. I discovered that all of his eight brothers and
three sisters had sarcodosis. My mother-law died of Ssarcoidosis/
pneumonia/Cancer in 1979. One sister-in-law died in 1985 of
Sarcoidosis/Pneumonia and I recently lost another sister in-law to
sarcoidoisis/lymphoma During the many years of marriage my husband
developed skin rashes , sinutis , dry cough, skin lesions, joint aches,
high cholesterol ,highly allergic to ants bits, high blood pressure,
reddish or yellowish eyes , lost weight and head aches . My husband
changed overnight and we divorced after thirty years. Sacoidosis had
affected his brain. The disease robbed me of wonderful husband and a
good friend. My ex-husband denies all sickness and live life
dangerously.
Name: Thomas Holcomb, Jr
Email_Address:
tomahawk1130@yahoo.com
From: Rocky Face Ga.30740
Found_Us_Via: Internet Search
Date: Thursday, February 19, 2009
Time: 05:45 PM
Comments:
Oh yes, my first try of alleve was Bell's Palsy, It lasted 6 months and
ended a marraige. That was 8 yrs or so ago. I have used it a time or two
and think I had speech impediments because of it. I tried it again last
week and have a bad rash on my right jaw. This crap is dangerous
top
March 2009
Name: Jenny Chandler
Email_Address:
jennydc55@yahoo.com
From: North Carolina
Found_Us_Via: Internet Search
Date: Monday, March 02, 2009
Time: 12:18 PM
Comments:
Hi! I was diagnosed with neurosarcoidosis in May of 2008. This is a rare
form of sarcoidosis and I need to know more about it. If anyone else has
this, please e-mail me so we can share info.
Name: SHANNON KELLY
Email_Address:
bourbon915@yahoo.com
From: connecticut
Found_Us_Via: Internet Search
Date: Thursday, March 05, 2009
Time: 03:26 PM
Comments:
My father has been very sick for the past 10 years! He is going on 59.
He has been disabled for the past 4 years. It started out as a type of
facial palsy. He has been everywhere on the east coast and still is
undiagnosed. It is definately not bells palsy. Few doctors have
diagnosed him with Sarcoidosis, however others have said it is not. He
is a 6 foot 5 inch 250 pound man that is no longer able to walk, lift or
do any type of activities. We've found this to be due to extremely high
lactic acid levels. Is anyone having this problem? He has been on
steroids for the last 3 years. I am asking for any similar cases.
Thanks
Name: Joanne Hill
Email_Address:
jojosarah@hotmail.co.uk
From: Coventry
Found_Us_Via: Internet Search
Date: Monday, March 09, 2009
Time: 05:51 AM
Comments:
Name: Jana A. K.
Email_Address: jakaram@att.net
From: new jersey
Found_Us_Via: Internet Search
Date: Monday, March 09, 2009
Time: 07:55 PM
Comments:
Doctors diagnosed me with Sarcoid in late 2008 after biopsies, ACE test,
and a two week hospitalization where they ruled out everything else they
could think of. ( I was there for persistent high fever, night sweats,
nausea, etc.) they found sarcoid granulomas in a groin lymphnode and
that they considered the sarcoid atypical, although I do not recall
precisely why except that I did not have red lumps on my legs. If
atypical or lymphnode granulomas are anything anyone has experience
with, I'd appreciate thoughts on that as well. Can anyone comment as to
whether they have found a physician who is a multi-system sarcoid
specialist or are there just organ/system experts who focus on how the
disease affects each organ/system? I see many doctors listed but no
substantive criteria for evaluating their expertise? Has anyone been to
Duke or UVA or any medical center that has a team of physicians who
co-manage sarcoid patients? I am an older mother of three young children
and I want to be around to raise them to maturity so I will greatly
appreciate any and all thoughtful responses.
Name: Lena R.
Email_Address:
sweetsbylena@yahoo.com
From: Apopka, Fl
Found_Us_Via: Internet Search
Date: Friday, March 13, 2009
Time: 08:32 PM
Comments:
Hi everyone, Its Lena again I haven't posted a message since August,
2008. Just wanted to give an update and ask a question. Well since
January I have been having trouble with my stomach. The Doc don't seem
to know what is wrong. However they do think that is possible that my
sarcoidosis has found its way to my stomach. Boy o Boy, this really
scares me. Well I have been scheduled for a endoscopy of my stomach.
That is a scope that they will use to look inside my stomach to see if
sarcoidosis is there of if it is something else. I am looking forward to
finding out what is going on but I am terrified of what I might find
out. Well I was wondering has anyone else been told that they have
sarcoid in the stomach? If so what have they done for you? Or is there
anything that they can do for you. My symptoms are A lot of pain in my
stomach, feeling full and sick to my stomach. Also some days I have
trouble moving my bowels. Some of you might say it sounds like irregular
bowels syndrome, but I had a ultrasound and a CT and they did not see
any signs of that. So please let me know what you think. Take care and
God Bless, Lena
Name: daryl purdy
Email_Address:
daryl_purdy@yahoo.com
From: Michigan
Found_Us_Via: Internet Search
Date: Monday, March 16, 2009
Time: 06:57 PM
Comments:
I have been diagnosed with sarcoid in July 08. confirmed by biopsy of
lymph node. I started prednisone treatment but could not tolerate and
was taken off. I went to see a pulminoligist and took a lung function
test it was abnormal for lung capacity. he is recommending no treatment
at this time but is keeping an eye on it. I see him again in April I am
currently having chest pain and my knees and muscle ache along with
fatigue and dizziness. My Dr has been trying to help but nothing seems
to be helping any advice or support anyone can offer would be greatly
appreciated
Name: naresh sharma
Email_Address:
nareshsudha1@yahoo.com
From: Panchkula, india
Found_Us_Via: Internet Search
Date: Tuesday, March 24, 2009
Time: 01:34 AM
Comments:
My wife was diagnosed of sarcoidosis which affected her spleen n liver.
she was loosing her weight and couldn't eat anything. Finally, with
steroids she started to get her strength back. slowly, the medication
was stopped n she was declared fit. Now, after one year, she is back in
bad health. her coughing is not going away. recently, she vomited blood
with lots of thick phlegm. docs said nothing to worry about. could she
again be having sarcoids? she is so scared to go to docs that she wants
homeopathy medication. can anyone suggest me, if homeopathy is good
enough.
Name: Tamie O'Connor
Email_Address:
tamie50@gmail.com
From: Canada
Found_Us_Via: Internet Search
Date: Saturday, March 21, 2009
Time: 03:54 AM
Comments:
I was told I have Saracoidosis in Nov.08. It is in my lymph nodes, but I
have pain in my hands and feet. The past month a lump appear on the
front of my lower leg. I am also having pain in my face around my eyes,
nose and ear. My eyes are light sensitive. My doctor has not given me
anything for it, wants to see if it go away on it's own. What I am
really concerned about is my eyes. My family doctor has made an
appointment to see an eye specialist but it is several months away. Has
anyone found anything holistic that could help with this disease.
Name: sheila white
Email_Address:
slwhite_74@yahoo.com
From: Madison WV
Found_Us_Via: Internet Search
Date: Tuesday, March 24, 2009
Time: 07:42 PM
Comments:
I was diagnosed in Nov. 2006 and going down up and up in size all the
time.
Name: Debi Bailey
Email_Address:
baileydeb@aol.com
From: Alabama
Found_Us_Via: Online Support Group
Date: Saturday, March 28, 2009
Time: 06:47 PM
Comments:
I was diagnosed with Sarcoidosis in May 2007 after seeing about 15
doctors since March 2007 including 3 emergency room visits. I had severe
pain in right side from shoulder to groin, constant low grade fever,
loss of appetite, nausea, extreme fatigue, anemia, and brain fog. My
last ER visit a lady doctor said it was in my head, I said Lady do you
think pain, fever, and throwing up is in my head?? Wow, was she a
doctor, don't think so... I reported her but do you think they did
anything. NOT, MY BAD I was a multi-tasking teacher juggling 5 or more
tasks in a very demanding and stressful school setting with a principal
witch from the north, I live in the south. I finally found a sarcoid
specialist in the area but he was a pulmonary specialist. It is not in
my lungs yet. He hardly wanted to look at me or treat me but was the
only one that knew anything about sarcoid. It is in my soft connective
tissues and some lymph nodes. I found some lumps and he biopsied proving
sarcoid. He sent me to Emory U in Atlanta but not much help there just
agreed with diagnosis. He tried predisone and then went to methotrexate.
I went to eating more natural and organic foods when possible and lots
of water. I finally went in remission about January 2008 and returned to
a full-time teaching job in a private school, easier and less stressful.
My symptoms have returned since February 2009 and becoming worse. I have
severe pain on right side from neck down, extreme fatigue, constant
low-grade fever, lots of brain fog, and less multi-tasking ability. I
was laid off and now working part-time in Adult Education. This is even
too hard sometimes. I am now going to Mayo Clinic in Jacksonville,
Florida for treatment options. I have more lumps that are now hurting
when touched and constantly, different sizes and shapes. My local doctor
has finally given me an antibiotic to try and plaquenill along with the
methotrexate. I take about 5 pain pills of tramadol and ibuprofen a day
but try not to. I do not have much of an appetite but make myself eat
frequent balanced meals and snacks. Has anyone had this type of Sarcoid
in the tissues? Has anyone gone to a Mayo Clinic and had good results?
It is frustrating when doctors will only look at one part of the body
and not connect the other parts to the condition or treatment. We have
got to be proactive and researchers ourselves to find what will work
best for our bodies with the support of our Father in Heaven and his son
Christ Jesus. Don't ever give up on this cause and keep fighting to
win.God bless us in well doing and be positively mad about sarcoid.Debi
Name: Carmen W
Email_Address:
carmenrw@gmail.com
From: Annapolis MD
Found_Us_Via: Doctor Database
Date: Monday, March 30, 2009
Time: 08:39 PM
Comments:
My 57 yr old husband has been living with sarcoidosis for many years.
I'm trying to find a good physician in the Baltimore Washington area.
Does anyone have any suggestions?
*Admin. Message-
Please try our
Dr. Database:
The
Worldwide directory of Sarcoidosis Physicians for a list of Sarcoid
specialists in your area.
top
April 2009
Name: DeannaBennette
Email_Address:
deannasep11@aol.com
From: OHIO
Found_Us_Via: Internet Search
Date: Thursday, April 02, 2009
Time: 08:49 AM
Comments:
Hi. My name is Deanna and about 4 years ago, my body started doing
strange things. Muscle type pains in my neck, gallbladder troubles,
pains in my left abdominal side, a horrible dry cough ( they said was
larngyopharnygeal reflux), major headaches and head pain, an MRI of the
brain with two lesions ( they thought would be MS ), and an ACE serum
test that said my level was at a 71. Okay, so now I am like having
massive pain near my spleen and of course I am thinking I have LYMPHOMA
or MYELOMA. But the more I read about Sarcoid, the more I am thinking it
might be that? I was told that with Sarcoid however, that you do not
feel pain in your spleen area.From other experiences, does anyone think
that Sarcoid is a possibility? When they did do my Spinal tap, they said
they founds something in my blood. I went for an IgG blood test, but
again it was negative. I am sick of Drs, different meds, and just the
NOT knowing. Any advice would be appreciated.Thanks.
Name: Linda T.
Email_Address:
mammalinda6060@comcast.net
From: maryland
Found_Us_Via: Internet Search
Date: Saturday, April 04, 2009
Time: 07:03 PM
Comments:
Hello everyone I visit this site sometimes when I need to vent. I've had
Sarcoid about 3 years now. I am suppose to be in remission, which I
don't understand because I still have some of the symptoms. Pain, Pain,
and more pain the pain never goes completely away. I have Sarcoid mostly
in my lungs, I'm finding it harder to breath. I on Advair and an inhaler
when needed. I develop weak muscles in my legs, my feet tingle a lot. I
have diabetes too which was discovered around the same time the Sarcoid.
The tingle in my feet is not cause by the Sarcoid I went to a Sugar
doctor (forgot what you call diabetic doctors) and he said that the
tingle in my hands and feet are not cause by diabetes. I have about
seven doctors, heart, arthritis, asthma and breathing problems, eye
specialist, foot doctor and my primary doctor. I'm on the Lyric and
Hydroxychlorquine genic or Plaquenil 200 mg. this helps some but the
pain in my legs feet snd shoulder is still always there. I am walk with
a cane now because my balance is off and I need the support because my
legs feel weak, my feet are sore I also have bone spurs. If this is
remission I truly do not understand I feel worse not that I did when I
was first diagnosed. I have one doctor who truly listen to me and that a
blessing, but honestly I am tired of all doctors and all the test
because I don't feel much better.
Name: Brian Nelson
Email_Address:
garrickthewise@yahoo.com
From: San Francisco,CA
Found_Us_Via: Internet Search
Date: Thursday, April 09, 2009
Time: 03:11 AM
Comments:
I'm 44 years old and I suffered from TB like symptoms for months before
being diagnosed with sarcoidosis of the lungs. During this period I
began to lose my appetite and I lost weight very rapidly. One night I
went to bed feeling like I was on death's door, and woke up feeling
better than I had in ten years. My symptoms had literally disappeared
overnight. And I don't know if this is a curse or not, but a year later,
I still don't have much of an appetite. For about fifteen years, My
weight had been 185 lbs, plus or minus 5 lbs. I now weigh about 142 lbs,
and I'm still losing weight. I receive my medical care through the
veterans administration and neither my chest doctor nor my primary care
physician shows any concern about this.
Name: Brenda U
Email_Address: bfu@comcast.net
From: TN
Found_Us_Via: Message Forum
Date: Thursday, April 16, 2009
Time: 08:06 PM
Comments:
I have posted here before and continue to check back week to week in
hopes of finding a message from someone who has finally found a cure or
a doctor who is familiar with this. I was diagnosed in '05 after being
being ill for about a year with weight loss, pain, nausea and even being
diagnosed with glaucoma. I was told I had lymphona til a biopsy
confirmed sarcoid. To make a long story short, I have experienced almost
each symptom that has been mentioned here. The high dose of prednisone I
took for over a year did nothing but nearly kill me mentally and
physically. It did not help at all. I have since changed doctors and my
new pulmonologist is from FL and supposedly an expert with this
condition. However, he says I am in remission but the only symptoms I
don't have now is the weight loss and severe dry cough. This last year
has brought me severe pain in my feet with numbness. I've had every test
imaginable for this and nothing shows up. Right now my right arm and
shoulder hurt so bad I had to come home from work and it even hurts
worse when I lay down. Once again, the doctors all tell me that none of
this is related to sarcoid. I've had the best winter in years with no
colds, bronchitis etc which is a blessing. My opthomolgist has insisted
from day one the glaucoma has nothing to do with sarc. I am struggling
daily just like the rest of you in trying to get by with this without
the doctors because of the lack of answers they have. I have come to the
conclusion that sarcoidosis is just a name the doctors have given to a
condition because they don't know what it is or have a clue as to why
one gets it or how to properly treat it. I've only known one person
personally who had it for 10 years and she passed away from problems
that arose from the sarcoid. Of course everyone has heard of Bernie Mac
and Reggie White and I thought surely their passing would trigger a
concern to find answers. My friend who passed away from complications
caused by this and Reggie and Bernie are African Americans. I'm
Caucasian and was 55 years old when diagnosed. I had been extremely
healthy til this time. I haven't heard of another person with this in
Chattanooga, TN although my doctors continue to tell me they have many
patients with this. I've found this message forum to be the most helpful
and informative avenue of information. Even when I've tried to tell the
doctors of all these same symptoms we all have mentioned it's as if I'm
talking to a wall. My doctors will not admit any of the aches and pains
I have are related to sarcoidosis and I don't think they will ever be
convinced otherwise. I wish you all good luck with easier pain-free
days.
Name: anneliz
Email_Address:
princessann51@yahoo.com
From: Clearwater
Found_Us_Via: Message Forum
Date: Friday, April 17, 2009
Time: 09:32 AM
Comments:
I have had sarcoid for 28 years. I really did not have major problems
until about 3 years ago when I started having sinus problems. The ENT
sent me to an internist who ordered all kinds of tests and actually
other then scarring in the lungs everything else was good. Then within
the year, I started loosing weight and was very tired. My blood work was
crazy too. I had almost no white blood cells. At that point my
internist, who is very good, realized that he did not know enough about
sarcoid so he contacted a rhemetologist who had experience with sarcoid.
She has 6 patients with the disease. She ordered all kinds of blood
work, ct scans and xrays. My ACE level was 143 at the time and I was on
the verge of having lupus. She put me on prednisone with the
understanding that she would wean me off within 6 months and I would try
Remicaide which is an infusion given every 6 to 8 weeks usually to RA
patients. The prednisone worked well and brought all my numbers into the
normal range. I have had 4 infusions of remicaide and my numbers
continue to be great. My advise to any of you would be to find a
specialist who works with other sarcoid patients and to try the
remicaide treatment. Now you must be tested to find out if you have
arthritus because that is the only way most health insurers will pay. I
have lived with this disease for half my life and I understand the
suffering most go through. As a side, 2 of my first cousins have the
disease although it has affected them in the eyes and the brain. There
is definitely an inherited tendency to this disease. Contact me if I can
be of help or answer any questions.
Name: Tony Dolan
Email_Address: tonyd@exam9.com
From: Dublin, Ireland
Found_Us_Via: Internet Search
Date: Thursday, April 23, 2009
Time: 06:24 AM
Comments:
I think most of us have systemic sarcoidosis which effects joints,
muscles, lungs, head, nose, knees, sleep sensory perception etc. My
condition aggravated so bad after I came off one year of Prednisone that
I was damned if I would ever go near the stuff again. I tried
minocycline which seemed to improve my condition but I found myself with
a permanent headache. I came off everything and built myself a small
japanese type garden and started Tai Chi. This worked in so far as I
recovered a sense of well being that had disappeared completely for
nearly four years. My doctor told me I was kidding myself and I wouldn't
be able to climb the stairs in a few years. I'm now on Methotrexate and
hydroxchlorquine which although hard from time to time, allows me to
retain a sense of well being for much of the time. My recommendation
though would be a nice space in a garden or park and the gentle practice
of Tai Chi.
Name: Tess Jelen
Email_Address: t.jelen@btinternet.com
From: London
Found_Us_Via: Internet Search
Date: Monday, April 27, 2009
Time: 03:42 AM
Comments:
My daughter has developed confirmed lung sarcoidosis. But struggling
with medication. waiting on confirmation if confirmed heart
irregularlies caused by medication or sarcoidosis spread to heart.
Already a fear of unconfirmed brain sarcoidosis (bell's palsy symptoms)
Name: DebbieM
Email_Address: randd@fuse.net
From: Florence, Ky.
Found_Us_Via: Linked Site
Date: Thursday, April 30, 2009
Time: 11:24 PM
Comments:
Hi, I hope you will help me. Have you or anyone you know had knee fusion
surgery? Was it helpful? I am scheduled for one next week and am
terrified. Please write soon. Thanks.
top
May 2009
Name: Lisa Brown
Email_Address:
lisarbrown77541@yahoo.com
From: Bay City,Texas
Found_Us_Via: Internet Search
Date: Thursday, May 07, 2009
Time: 09:54 PM
Comments:
HI!!! I have had sarcoid since 2002. An last year in 2008 I got really
sick because I got off my medicine and i didn't get my peroid for 4
months. Well I started taking my meds again and my peroid started back
in up in July of 2008 and I have been getting it every month since then,
but it only last for 2 to 3 days max. Now that I am healthy again me and
my husband have been trying to have a baby. An so far theres been no
luck. Now I am starting to think that I can't get pregnant because of
those four months that I didn't get my peroid. If there is anybody that
has had trouble conceiveing or who has had to same problem please let me
know
Name: Marvin Fleischman
Email_Address:
m0flei01@hotmail.com
From: Louisville, KY
Found_Us_Via: Internet Search
Date: Sunday, May 17, 2009
Time: 10:35 AM
Comments:
Have been diagnosed with pulmonary sarcoidosis. Primary symptoms
:frequent deep coughing, sometimes dry, sometimes wet, sometimes cough
up a gelatinous mass. Shortness of breath after coughing, shortness
seems to diminish as I exercise - walk, bike, lift weights. Coughing
spells tire me out. Other symptoms are sore throat and nasal discomfort,
like an allergy. I do have allergies, live in the Ohio Valley, and had
walking strep pneumonia Oct. 2008. Severe coughing seems to have started
after bronchconscopy. Any suggestions as to alleviating symptoms,
especially coughing, without going on corticosteroids or other "heavy"
medications?
Name: Kaan Kaplan
Email_Address:
kaankaplan09@yahoo.co.uk
From: UK
Found_Us_Via: Internet Search
Date: Saturday, May 30, 2009
Time: 06:09 AM
Comments:
I have been diagnosed with sarcoidosis for over 2 years now, it started
with "lumps" to my forehead and temple. My doctor took samples from
both, which led to the scar tissue opening (3 months later) and has left
nasty lesions. I have taken pednisolone and it has not worked the
lesions have been weeping and admittedly been getting worse!! The doctor
has now put me on Prtopic...will this help?
Name: barbara
Email_Address:
bopareena@yahoo.com
From: long island
Found_Us_Via: Internet Search
Date: Saturday, May 30, 2009
Time: 10:29 PM
Comments:
I need to vent. I am back on Prednosone and I can't take getting fat
again. I can't move. I am now wheelchair bound.
The good part is my husband is my caretaker and he is wonderful. Thanks
for letting me blow off some steam.
happy
birthday jay!
Name: Theresa
Email_Address:
totallyhip2004@yahoo.com
From: ohio
Found_Us_Via: Linked Site
Date: Sunday, May 31, 2009
Time: 07:23 PM
Comments:
After nearly 2 yrs of seeking treatment for uvitis, I was diagnosed with
Sarcoidosis. This being the cause of the inflammation in my eyes. I also
have several nodules in my lungs. I am seeing both a retina specialist
and a pulmonologist. I have tried the prednisone, but do not tolerate it
well at all. My problem is that the specialists only want to treat that
area, and I need someone willing to treat the rest of the system as
well. I have had lots of leg, ankle pain and swelling. General achiness
and just plan not feeling well. I do suffer from b12 deficiency and am
sure that this also is affected, but who will treat the total system? I
have insurance, but limited resources otherwise, and find myself in a
pickle because my husband has many chronic health issues that require
much needed medication, at a great expense to us. He is totally
disabled, and has no RX coverage at all due to the prohibitive cost to
put him on my employer group insurance plan. What is a person to do when
the need is there, but the finances aren't and the answers don't seem to
be coming from the doctors you see. It gets rather discouraging.
top
June 2009
Name: michael graves
Email_Address:
michaelgraves@hotmail.co.uk
From: cambridgeshire, england
Found_Us_Via: Newsletter
Date: Tuesday, June 02, 2009
Time: 09:14 PM
Comments:
Hi. I have been diagnosed with sarcoid for 2 years now. it all started
when i had to go to hospital for a blood test, i had been feeeling dizzy
and breathless for months. the results of the blood was back within 2
hours and i was rushed into hospital. they told me i had a blood clot on
my lung and i was going to die, when i didn't they then sat me down and
told me i had cancer and was going to die, within a month i was still
walking about and a doctor then told me i had aids. it goes on and on,
when my aids test was negative i was then told i had cancer again, after
3 biopsys i was diagnosed with sarcoid. i have the usual aches in my
joints and muscles, my chest is heavy and some days i feel like im
pulling a truck behind me. my sinus problems are constant and my water
retention is terrible. what thing i am wondering especially, does anyone
have sharpe stabbling pains in the feet, hands and private parts????
very embarrasing to keep dropping the trousers to endless doctors ony
for them to scratch their heads!!! can anyone out there give some hope
for the future? even at 35yrs of age i feel well into my 50's although
looking at me you wouldn't know anything was wrong, people even keep
telling me how well i look!!!!!! its true others think you are milking
the condition, its nice to know im not alone.
Name: Karen Crandall
Email_Address: crackpta@aol.com
From: Holt, MI
Found_Us_Via: Local Support Group
Date: Saturday, June 06, 2009
Time: 07:19 PM
Comments:
My name is Karen and I am going through testing for sarcodoisis and need
some support, I see the pulmonologist in our hometown next week!
Name: EUREKA DAWSON
Email_Address:
eureka.dawson@yahoo.com
From: Pontiac Michigan
Found_Us_Via: Internet Search
Date: Monday, June 08, 2009
Time: 01:49 PM
Comments:
My concern is in regards to my Husband Miguel. He was diagnois with
Sarcoidosis about 7 years ago, our first year of marriage. it started in
his lymph nodes, then his lungs, abdomen, skin, right eye, and lately
his bone marrow. He has been on prednosine high dose low dose along with
other medications. Were in the process of trying to wean him off the
medication however ever time they try his condition get worse. My
concern is that it doesn't seen like any of his doctors are concern all
they do is prescribe medication. My husband see 7 different specialist
for this illness and it seems like his condition is not getting better.
i don't know what to do he's in pain everyday and i don't know how to
help him.
Name: John Wilson
Email_Address:
johnmwilson3@gmail.com
From: SF Bay Area
Found_Us_Via: Internet Search
Date: Monday, June 08, 2009
Time: 11:13 PM
Comments:
Hi. I'm 41. Two months ago I saw my GP for a dry cough that just
wouldn't go away. She order a chest X-Ray, then a CT scan, and finally
said I had a mass in my right upper lobe and sent me to a pulmonologist.
The pulmonologist did a bronchoscopy, and then next day called me to say
it wasn't cancer. She said it was tuberculosis and put me on a four-drug
antibiotic cocktail. But, my skin test came back negative for TB, as did
my blood test. The AFB stain from the biopsy came back negative, and
finally the culture from the biopsy came back negative. So, next step
was off to a surgeon for a VATS lung biopsy. The biopsy was quite
painful and required a 3 day hospital stay. A week later my
pulmonologist told me I had sarcoidosis, took me off the TB meds, and
put me on 60mg prednisone and sulfamethoxazole. I haven't had any skin
involvement, but I have been having severe pain in my left calf near the
ankle since January 2009. I feel the leg pain is related to the
sarcoidosis, but my Orthopedic doctor insists the leg pain is due to a
narrowing of some nerve tunnel in my lower back. He is recommending a
cortisone shot in my back; since I'm getting no relief from 60mg
prednisone I can't see how a steroid injection is going to cure
anything. Can anybody point me to some hard facts that link bone/joint
pain to sarcoidosis? Also, any recommended treatments for the bone/joint
pain would be appreciated. Many thanks in advance!
Name: Audrey Nelson
Email_Address:
audreyciam@yahoo.com
From: Flower Mound, Texas
Found_Us_Via: Internet Search
Date: Tuesday, June 09, 2009
Time: 07:39 PM
Comments:
I was diagnosed in 1998 after having a episode of "Sun Downers". Have
lesions and loss of pigmentation on extremeties. Have Rheumatoid
Arthritis, acute sleep apnea, Enlarged lymph nodes throughout body.Have
recently been diagnosed with temopral artritis, swelling with in skull.
I am on high powered steroids and Naltroxene. AM wondering what other
meds have been tryed and if any assistance for the medical coverage has
been found by anyone. I work contract nursing and medical benefits not
offered. Any help would be appreciated, please email. Thanks, Audrey
Name: Kay Crump
Email_Address:
slug11954@yahoo.com
From: West Virginia
Found_Us_Via: Internet Search
Date: Thursday, June 11, 2009
Time: 11:52 AM
Comments:
I was diagnosed with Sarcoid Aug. 08. I was told it was no big deal. My
liver is enlarged, my spleen is enlarged. Was told it would go in
remission within 2 to 5 years. But I have questions - and they get
brushed off. Does the sarcoid continue to spread? I've noticed lately if
I run, my chest hurts. My left hand feels like it's asleep all the time.
My right hip area hurts so bad I can't lay on it. My knees hurt going
upstairs, my left shoulder hurts so bad at times, I can't lift it. I'm
54, I thought this was old age. Now, I'm wondering if it's sarcoid. My
doctor told me to take my medicine "Plaquenil" and it would be ok. I'm
not fond of medicine and fearful of side effects. So, how do you know if
it's sarcoidosis or not? Will it go away? Am I being paranoid? I don't
know what to expect. Any help would be appreciated. People at work call
me "Sarcoid Sally"
Name: Maureen
Email_Address:
mtkishbaugh@hotmail.com
From: Pennsylvania
Found_Us_Via: Internet Search
Date: Friday, June 12, 2009
Time: 03:04 PM
Comments:
When my symptoms started, I thought that I had asthma or that I was just
out of shape. Then other things started to happen: granulomae surfacing
on my skin, heart beating so fast and hard that it shook my body, white
spots in my eyes, dizziness, frequent urination, doubling over with
pain... I thought that I was having trouble with my gall bladder.
Doctors told me: "You must be depressed. Try some Prozac," "You're too
young to have this many things wrong with you," and my personal
favorite,"You're wasting my time." Finally my gyn was willing to do an
exploratory for the pain that caused me to double over. He saw the
pre-op lung xray and thought it TB! Of course, I was able to see a
pulmonologist the very next day. He wanted me to go on steroids. I
refused even though my PFTs were below 50%. Instead, I went to a
homeopath who put me on an immune system cleansing diet. I was doing so
much better until my husband died suddenly. I stopped eating right and
gave up walking. It's time to go back to what made me better because all
the symptoms have returned.
Name: DebbyElaine
Email_Address:
evangeline67@hotmail.com
From: Pennsylvania
Found_Us_Via: Internet Search
Date: Sunday, June 14, 2009
Time: 09:08 AM
Comments:
I was originally dx. with Atypical Polymyositis and Sarcoidosis and the
process first was identified in my lungs but I am profounddly affected
my weakness in my muscles. My understanding is that Sarcoid was also
found in the muscle fibers. I am fighting debilatating weakness, fatigue
and loss of mobility. Activity exacerbates the disease process and I
feel that the pattern in my lungs has been hard for pulmonologist to
treat. I have had multiple pneumononias and the status of lungs has not
been good. Do you experience muscle weakness and loss of mobility?
Name: diane feliciano
Email_Address:
felicianod36@yahoo.com
From:
Found_Us_Via: Internet Search
Date: Monday, June 15, 2009
Time: 05:50 AM
Comments:
i wasdiagnosed about 5 years and yes it is not easy. my mother has lived
with it for 29. it takes a lot of hard work, patience with your body and
do what you can when you can. this is just a little bit of advice, i'll
have more later.
End of new messages
top
