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September 2009
Name: Susie Sarciod
Email_Address:
click here to email me
From: southeast WI
Found_Us_Via: Internet Search
Date: Monday, September 07, 2009
Time: 07:33 PM
Comments:
I recently found out I had lung sarcoid in April 2009. It seems many
Dr's don't know much about it. Been on prednisone and Methotrexate.
sometimes I think I feel worse now then before I knew. How do you find a
good local Dr. How do you know if they are a good Dr. Any name
suggestions from other people in southeast (Milwaukee, Menomonee Falls).
*Admin. Message- Try the
Dr. Database:
The worldwide directory of Sarcoidosis Physicians.
It may help.
Name: Deanna S
Email_Address:
click here to email me
From: Michigan
Found_Us_Via: Message Forum
Date: Tuesday, September 08, 2009
Time: 07:00 PM
Comments:
I was diagnosed with Sarcoidosis in April 09. My symptoms started in
about Sept. of 08 with extreme fatigue. In January my ankles started
swelling then the glands right below my ears. I got a severe case of
bronchitis right after this and the cough would not go away. I had a
biopsy done of my gland and it showed Sarcoid. I am grateful how quickly
I was diagnosed after reading about others struggles with getting a
diagnosis. I was put on Prednisone in April starting at 40 mgs. I'm not
down to 10 mgs as of a week and a half ago. I've been experiencing the
fatigue again and started feeling the "heavy" chest and breathing. I
don't want to tell my doctor because I don't want him to up my dose of
prednisone again. He is going to wean me down to 5 mgs next month. Has
anyone else experienced this when weaning off steroids? How long does it
take to level out? Or doesn't it? I have heard that even after the lymph
nodes shrink back down you can still have symptoms. I would appreciate
any information you can give me!
Name: gretal1
Email_Address:
click here to email me
From: Washington
Found_Us_Via: Internet Search
Date: Friday, September 11, 2009
Time: 02:18 AM
Comments:
I would like to connect with other veterans who served during the
Vietnam era and may have been exposed to agent orange who suffer from
sarcoidosis to see if there may be a common link. I know of the Navy
ship veterans but I'm wondering about other Veterans who may NOT have
been on ship that may have served in Vietnam or been exposed to Agent
Orange to see if there is a common link. My brother in law has severe
sarcoidosis heart, lung. Has anyone with sarcoidosis who served in
Vietnam been successful with VA as recognizing it as a service connected
disability outside of the Navy shipmen? VA has refused to acknowledge he
even has sarcoidosis even though private doctors have. Help please.
Name: Diane Baxter
Email_Address:
click here to email me
From: Washington, D.C.
Found_Us_Via: Internet Search
Date: Saturday, September 12, 2009
Time: 08:56 PM
Comments:
Hello, I was diagnosed in 1974 with lung involvement. Over the years, I
have experienced many ups/downs, as many of you have mentioned,
involving my lungs, skin, lesions, eyes and an enlarged vena cava gland.
I have had steroid injections and high enough steroids to shock my
system back to good health. I also took plaquinil at some point. My
advice to many of you is to stay diligent, read and ask many questions.
If the Dr is not familiar with Sarcoid, keep looking to find one who is
and one who can also refer you to other Drs (knowledgeable of Sarcoid)
when other ailments pop up. I have been with the same Dr since day one!
and he has never failed me. My new dilemma as of "today" I was diagnosed
with Graves Disease (hyperthyroidism). So I am doing my homework to find
out as much as I can about this new adventure to help my Dr. help me.
This is how I found this website. So much more is now available than
back in 1974 when very few knew about sarcoidosis. I found a 2006 study
connected Sarcoid and Thyroid diseases. I'll be reading this tonight.
If anyone has had this experience, I'm of course interested in
connecting with you. If I can share or help others new to this disease,
please let me know. Be Blessed.
Name: Eileen Owen
Email_Address:
click here to email me
From: WA
Found_Us_Via: Internet Search
Date: Sunday, September 13, 2009
Time: 05:13 PM
Comments:
Is there a Sarcoid MS connection? I was diagnosed with MS 15 years ago,
Sarcoidosis 5 years ago. Is there any research or publication that
investigates these diseases side by side?
Name: Myrna Kelly
Email_Address:
click here to email me
From: Northern Ireland
Found_Us_Via: Internet Search
Date: Wednesday, September 16, 2009
Time: 05:30 AM
Comments:
This is my first time on the forum and would love to hear from other
suffers who may be able to update me on the latest treatments.
Name: Jeannie
Email_Address:
click here to email me
From: virginia
Found_Us_Via: Internet Search
Date: Wednesday, September 16, 2009
Time: 04:39 PM
Comments:
I need an internist that I can turn to for this very complex disease. My
pcp did not read my chart and gave me high doses of vitamin d. It was
brought to my attention that this was very dangerous. I need someone who
has some expertise in this field.
Name: Julie Kelly
Email_Address:
click here to email me
From: Sydney, Australia
Found_Us_Via: Internet Search
Date: Friday, September 18, 2009
Time: 02:42 AM
Comments:
I have had lung sarcoid and iritis (eye - not for the last five years)
for 13 years. Drs. thought I had lupus or RA - but diagnosed with
sarcoid after a biopsy. Have also had brain mri's and a scare in
hospital with heart/blood clot fear (turned out negative - thank God).
At the moment feeling down and lousy (racking cough - GP thought it was
whooping cough -, exhausted all the time and bowel/kidney problems) and
have just gone through my yearly xray, bloods and ct scan. It looks like
they are suggesting an endoscopy ct biopsy. Has anyone had one of these
at all? I feel a bit on the scared side to say the least! Hope anyone
can help. God bless and keep positive!!
Name: william langer
Email_Address:
bill82390@aol.com
From: marion
Found_Us_Via: Internet Search
Date: Monday, September 28, 2009
Time: 07:21 PM
Comments:
well my mom was found to have it in her lungs 8 years ago it has spread
to her stomach, small and large intestine and she had a seizer in which
they discovered a brain lession is there support groups out there for
family, she has been on all kinds of meds since this started I would
just like someone to contact me with some info. william
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October 2009
Name: Cheryl Ridings
Email_Address:
ridings55@cox.net
From: Oklahoma City, Ok.
Found_Us_Via: Internet Search
Date: Thursday, October 01, 2009
Time: 08:46 AM
Comments:
Has anybody been diagnosed with sarcoid of the lungs by a biopsy, when
it didn't show up on CAT Scan?
Or has anybody been diagnosed with sarcoid of the skin, only?
Name: Michelle
Email_Address:
kre8tive.soulz@yahoo.com
From: Pittsburgh, Pa
Found_Us_Via: Internet Search
Date: Sunday, October 04, 2009
Time: 07:13 AM
Comments:
Hello. I was diagnosed with sarcoid in 1998. I had been sick since
giving birth to my first son in 1991. started with pneumonia and by
1998, I weighed 78 pounds and was very fatigued and couldn't walk to the
corner without wheezing heavily. during that time most doctors thought I
was crazy. it wasn't until I developed a stye on my left eye and a
lesion on my face that a visiting doctor from another country had a
lymph node on my neck biopsied for sarcoid. I was put on Prednisone 20
mgs. I went into remission in 2000..after I had my second son. I took
prednisone while carrying him and he now has been diagnosed with Autism.
In April of this year. my left side went completely numb and weak. I was
hospitalized for 10 days(the same hospital where I was diagnosed with
sarcoid). I was told I had MS. Lyme disease and was put through
countless tests. the doctors tried to tell me there was nothing wrong
with me. so I was given Baclofen and sent home while they conduct their
testing. now its been 6 months and the symptoms are worse than ever. I
now have mucus in my lungs. swollen glands. nodule on my thyroid and a
microadenoma on my pitutary. not to mention I caught a upper respitory
infection and I cannot shake it off. I know I am going out of remission
because I am so tired that it seems I cannot get enough sleep. also my
memory is getting really bad. I'm so angry with these doctors who had me
in their care in April..(they found my biopsy in June. was under my
married name). now im back on prednisone and I am getting worse than
better. I'm very scared and I have been dealing with this illness alone
for over 11 years. just need to reach out and talk to like minded
people. glad I found this site. Blessings to all!!
Name: Lynda Stark
Email_Address:
StarkL24@yahoo.com
From: New Jersey
Found_Us_Via: Internet Search
Date: Sunday, October 04, 2009
Time: 08:33 PM
Comments:
I was just diagnoised and has anyone back successful managing sarcoidois
using holistic methods, like a special diet or acupucture?
Name: Bo Tanner
Email_Address:
botanner@embarqmail.com
From: Ocala,Florida
Found_Us_Via: Internet Search
Date: Monday, October 05, 2009
Time: 11:07 AM
Comments:
I was diagnosed with Lung Sarcoid in Sept.08(30% Lung Capy) and was put
on Prednisone in June'09.I have to have oxygen to sleep with and any
movement over 20 feet I have to carry my oxy bottle.I am using a local
Pulminary Doc and he keeps playing with my Prednisone.I am currently on
20mgs daily cut down from 40mgs and this is not any help as I feel just
as I did when I was diagnosed.I would like to see if anyone has this
problem and where to go next?
Name: Rebekah
Email_Address: shari@wbyg.com
From: OH
Found_Us_Via: Internet Search
Date: Tuesday, October 06, 2009
Time: 08:14 PM
Comments:
I was diagnosed with sarcoid June 2008. Took plaquenil for awhile,
stopped it. For the past month, haven't had any symptoms. Does that mean
I'm in remission, will everything go back to normal? Will stress bring
it back? Is stress a big problem with it? Can my heart be affected and
me not know until I die from it and they do an autopsy? I have so many
questions. I feel better today than I have in the past 15 months. Is it
over? How do you know? local doctors can't help. Will blood work show
it's still in me? HELP, please? I've read so many internet articles, but
no real answers for my questions
Name: Danny Slack
Email_Address:
slack2d@kochind.com
From: Ft.Madison, IA.
Found_Us_Via: Internet Search
Date: Wednesday, October 07, 2009
Time: 02:55 PM
Comments:
I have lost my appetite and being losing weight, but my VA doctor do not
want to put me back on prednisone.She said that she has never heard of
anybody losing there appetite. But I'am still losing weight and don't
know what to do. I have had sarcoidisos for 19 years.
Name: Lenora Elkin
Email_Address:
lenorashome@shaw.ca
From: Canada
Found_Us_Via: Internet Search
Date: Saturday, October 10, 2009
Time: 02:23 PM
Comments:
has anybody experienced severely dry scalp and B12 deficiency with
sarcoid? I had sarcoidosis for years in my lungs was treated with
prednisone and it cleared the lung nodules. I also have had chronic
joint pain all my life. I thought i was doing ok but this scalp rash
thing started last march and three different types of topical steroids
haven't touched it. Also I had severe cramping in legs and feet and a
horrible depression caused by B12 deficit. Are they related to the
Sarcoid?
Name: mitzi hobson
Email_Address: mdhobson@aol,com
From: New Mexico
Found_Us_Via: Internet Search
Date: Sunday, October 11, 2009
Time: 08:32 PM
Comments:
I was diagnosed with sarcoid in 1996 through bone marrow. Since then, my
mobility has deteriorated and I had both knees replaced last year.
Success is minimal with less range of motion than desired. Few docs in
NM and I am looking for other resources. Thx
Name: Deborah
Email_Address:
Minnie220@gmail.com
From: State College, PA
Found_Us_Via: Message Forum
Date: Wednesday, October 14, 2009
Time: 08:51 AM
Comments:
I am 43 and I was diagnosed with Neurosarcoidosis after a brain biopsy
in December 2007. I suffered for many months with severe headaches,
seizures, weight loss, numbness, temporary loss of vision, tingling of
the arms and legs. I was told my local doctors that I was having
anxiety, possible MS. I was sent for PT, Massage, counseling sessions,
spinal taps, Psychiatric inpatient, MRIs etc...It was the most
frustrating experience and I was very sick. I was emergently admitted to
a specialty facility for a proper diagnosis. Since this took place, I
have been on Prednisone in high doses which has now tapered down. I have
been on several medications to suppress the immune system. I went thru 6
months of chemotherapy (cytoxen). I am in pain every day. My hips/ knees
ache even after sitting or standing for a short period of time. My head
hurts every day. I am just looking for someone who may have experienced
something similar to myself. I realize that Sarcoid mostly affects the
lungs however, it was in my brain, spinal cord and optic nerve. Thank
you for listening.
Name: ARusso1
Email_Address:
arussoa@wowway.com
From: Michigan
Found_Us_Via: Internet Search
Date: Sunday, October 18, 2009
Time: 08:53 PM
Comments:
Hello, I was diagnosed with sarc by skin biopsy in 2000, although I went
through the diagnosis "nightmare" for a few years prior. The first clue
I had an autoimmune disease was when my eye doctor said he saw a "spot"
in my eye and I might have Lupus. I went to a cornball rheumatologist
who did correctly diagnose Fibromyalgia, but I knew there was still
something else going on. The cornball kept telling me there was nothing
else wrong with me, and even yelled at me when I told her I could not
tolerate the 2nd tricyclic medication she prescribed. After that, I was
lucky to find a really good rheumetologist who went through a lot with
me, but he retired about 2 years ago. I have been seeing his partner but
I feel like I am sicker now than I was two years ago. I am having a bad
emotional time right now because I have been on steroids for about 2
years and now my adrenal glands will no longer function. I know a lot of
you are familiar with the steroid rollercoaster. But every time I try to
come off them, I get even sicker. I now have an appointment to see an
Endocrinologist and found out I may have to be on steroids forever. I am
really not happy with this. Prior to the steroids, I was on Enbrel until
I had a major flare. I was taken off the biological and put on the
steroids and have been on them ever since. I would like to know if there
is anyone out there with sarc that has been on biological medication (Enbrel,
Humira, Orencia, etc.) and what your experience was. I would like to go
back on one after I get the adrenal/steroid thing under control and want
to arm myself with as much info as possible, especially about any bad
side effects due to mixing the biological with other prescribed
medications. When I was first diagnosed with sarc I thought I was alone
because I had symptoms all over (skin, eyes, joints, kidneys) except not
in my lungs. All the information I could find said 90% of sarc patients
have lung involvement. If it wasn't for sites like this I would still
feel alone. Thanks for your input and keep your spirits up. Remember
there is blue sky where there was once clouds.
Name: Brent Thayne
Email_Address:
bthayne@pacbell.net
From: Michigan
Found_Us_Via: Internet Search
Date: Monday, October 19, 2009
Time: 03:53 PM
Comments:
My wife has Sarcoidosis and is loosing weight. I don't understand why
and her doctor doesn't seem concerned about it. She is down to 85 pounds
and I am very concerned. Anyone experiencing the same and what did you
do about it.
Name: Vicky J
Email_Address:
tvjohnson@charter.net
From: Alabama
Found_Us_Via: Internet Search
Date: Friday, October 23, 2009
Time: 01:28 PM
Comments:
My husband has just been diagnosed with Sarcoidosis. He has been
swelling terribly. He already had psoriasis, but not his skin has red
patches all over his check and legs. Right now he is on 2 different
water pills to reduce swelling and then he is also on 3 different
inhalers. The doctor don't want to give him prenisone right now because
of all of his weight gain (fluid). The doctor wants his swelling to go
down by taking the water pills and will possible put him in prenisone
later. I live in a small town. Should I get out of here and take my
husband to a specialist?? I know nothing about this disease. All I know
is my husband has felt sooo bad for 2 months. His fingers tingle all the
time. He can't breathe (extreme shortness of breath). Thanks for
listening.
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November 2009
Name: Janaki Rasiah
Email_Address:
janaki_rasiah@hotmail.com
From: Australia
Found_Us_Via: Internet Search
Date: Friday, November 13, 2009
Time: 06:57 PM
Comments:
I was diagnosed with sarcoid 11 months ago and the symptoms were
Meningitis that is headaches that got worse daily, joint pains and a
rash on my legs. A lymph node biopsy confirmed what the dr. Suspected. I
was taking prednisone and was tapering it down to 2mg and the sarcoid
flared up as iritis and then retinopathy. Now Prednisone has been
increased to 10 mg again. My problem is not losing weight it is gaining
weight. I have a wonderful Rheumatologist who sees me every month and I
have to do a whole lot of blood tests before I see him. I don't know how
long I have to keep taking the medication and neither does my dr. Some
times I feel very tired and the headaches come back if I overdo things.
So I now try to take plenty of rest and try not to stress for I was told
by someone this could be one of the trigger factors. by the way I lost
my hearing in my left ear last year and it was diagnosed as idiopathic
labrinthitis but now I wander if it was to do with Sarcoid.
Name: Brian peters
Email_Address:
designconceptsandcarp@gmail.com
From: Lowell Indiana
Found_Us_Via: Internet Search
Date: Friday, November 27, 2009
Time: 04:51 PM
Comments:
Hi. I was diagnosed with Sarc in July of 2008. I had extremely swollen
ankles and shortness of breath. Went on pred for 6mths and am still on
methotrexate. I have had numbness on mostly on left side. from gum pain
to tingling in my toes. But mostly on my left side. I walk with a limp
on my left side and have arm muscle pain and severe cramping. My
rheumatologist says my numbers look good and I must have some
muscular/skeletal injury. I hear everyone's pains and I know where your
coming from. I'm socially withdrawn.
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December 2009
Name: Timothy
Email_Address:
tim4343@gmail.com
From: Florida/Walton
Found_Us_Via: Internet Search
Date: Wednesday, December 02, 2009
Time: 09:48 PM
Comments:
Ok well had a heart attack in March 2009 , Dr after surgery said we need
to talk told me about large lymphnodes in abdomen and chest had to wait
2 months to biopsy, had a mediastiscopy to confirm either lymphoma or
sarcoidosis it was sarcodosis, well 10 months now into it it has spread
from my lungs to my arms and legs, was on predinisone was tappered down
now its back in lungs hurts like crazy,is there any one out there that
really knows if Drs really know what this stuff is , by the way in march
i was wearing 42 size pants am now wearing 34, i feel like an
exsperiment in a mad Drs scary movie
Name: Joy Robinson
Email_Address:
robinsonjoyj@yahoo.com
From: Houston Texas
Found_Us_Via: Internet Search
Date: Monday, December 07, 2009
Time: 11:04 AM
Comments:
I was diagnosed with Sarcoid Dec 2008. They found scar tissue in my
lungs. I am really freaked out I see a pulmonary doctor but he hasn't
put me on any meds and I am not sure if he is to familiar with the
disease. I don't have any support for this and now I see like these
black lines when i look side to side or like a white floating string. I
am scared to death and always feel like I am about to die. Does anyone
know of a doctor in Houston Texas. From reading it seems I won't live
long. I'm 37 year old female all alone.
Name: Earlene Gillis
Email_Address:
dan_glls@yahoo.com
From: Brandon, Fl. 33510
Found_Us_Via: Internet Search
Date: Monday, December 14, 2009
Time: 12:08 PM
Comments:
I'm not sure if I have sarcoid or not. I was diagnosed in 9/2007 that I
did. I go to the wound center at St. Joseph wound care center in Tampa.
The lesions on my legs got pretty bad. They were treating them with
contreat, now using ConvaTec. Has anyone out there been diagnosed with
sarcoid of the skin. I see a pulmonary Dr. for the lungs. My lungs are
fine. I have places on my arms and one finger that are bad. They are
beginning to come in different places. Also should I have the blood test
to verify the disease. Please Email me if you have the skin disease.
Name: MC Johnston
Email_Address:
maryclaytorjohnston@yahoo.com
From: South Carolina
Found_Us_Via: Internet Search
Date: Thursday, December 17, 2009
Time: 12:56 PM
Comments:
I was diagnosed with sarcoid last week...Fortunately, I have always felt
great with no symptoms other than weight loss. The dermatologist found
the spots on my skin and sent me to a pulmonary specialist...I have had
numerous chest xrays and a catscan. They said I have filtrates in my
lungs and also a high amount of calcium in my urine (which I found out
can cause kidney stones) so, my dr is going to put me on prednisone so
that I don't develop scarring on my lungs...I am terrified of the side
effects. Has anyone taken it before without gaining weight? If so, how
did you avoid it? Any help would be very much appreciated. I am truly
baffled by this disease and a little scared!
Name: Jenny from Australia
Email_Address:
c31985@hotmail.com
From: Australia
Found_Us_Via: Internet Search
Date: Sunday, December 20, 2009
Time: 11:26 PM
Comments:
Hi everyone, I am from South Australia. Three months ago I began
experiencing sensation changes in my left leg – decrease in sensation,
burning foot and a general yuck feeling. Two weeks later this moved up
the left side of my torso. I was sent to a neurologist who was worried
about MS. I had a full brain and spinal MRI which rejected MS but which
found something inside my spinal cord at T4 resulting in spinal cord
compression and change in sensation from this level down. At the time of
my MRI a chest x-ray was also taken which showed inflamed lymph glands.
Cancer was suspected so I underwent blood tests and a complete neck,
chest, abdomen and pelvic contrast CT scan. Results showed a small
number of marks in my lungs which were suspected to be granulomas. I was
sent for a mediastinoscopy last week and had a biopsy taken of the lymph
glands inside my chest. The results have shown I have sarcoid. My chest
specialist has now said he cannot be 100% sure the thing in my spine is
a granuloma as there has never been a case reported worldwide of a
granuloma directly inside the spinal cord. I will be starting steroid
medication this week so if my symptoms improve then I guess sarcoid is
in my spine. I have no other symptoms at all besides the sensation
changes. I am worried about steroids. Does anyone have any good stories
about the use of steroids? It is always good to get positive information
at times like this. Many thanks :)
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January 2010
S.O.S Wishes Everyone A
HAPPY, HEALTHY NEW YEAR!
Name: Jeanette
Email_Address: jlhk1985@hotmail.com
From: VA
Found_Us_Via: Internet Search
Date: Friday, January 01, 2010
Time: 04:37 AM
Comments:
Hi my name is Jeanette and in Oct 2009 I just found out I have
sarcoidosis stage 2. My uncle now 36, found out at age 24 he has
sarcoidosis,and has been in remission for 12 years now. I am 24 years
old, and I didn't have the major coughing like some of the sarcoidosis
patients do. I just had a baby in June 2009, and in the end of Aug. and
all of Sept. I had night sweats, I felt really tired, and my feet and
ankles were so swollen. I went to two different doctors and i even went
to the ER but they just told me to take a water pill, and that nothing
was wrong. So I went to the doctor I trust the most (my ob/gyn) and told
him what was going on with me. I was then referred to a heart doctor
that same day i went into my doctor and had a blood test to see if I had
a blood clott. My d dimer test came back high so I was then admitted
into the hospital that very same day for a blood clott. Because they
could not find a blood clott when they did a doppler test, they then did
a CT Scan
with contrast dye. I then found out that I have enlarged lymphnodes in
my chest and abdomin, and nodules in my lungs. The doctors first told me
that they thought it was lymphoma cancer, but after the biopsy they
found out it was sarcoidosis. Before I got my resluts back I started to
have horrible joint pain. I had to follow up with one of the doctors I
saw in he hospital, and asked if he could prescribe me daypro 600mg, 2
tables a day (because my uncle took that for joint pain too). I started
eating healthy and my joint pain has been gone since. When I went to see
my pulmonary doctor he said there was no need for the steroids since I'm
not having any problems. I feel that I'm doing better, but my chest xray
still shows that I have sarcoidosis. I am not on steroids. I have gotten
my heart checked and they said that i have peripartum cardiomypothy
which is weaking in the heart muscel after having a baby. but they said
its mild and it looks like its going away. i got my eyes,
and kidneys checked and so far they are good. i'm happy i didn't start the steroids right away. i go back in march to get another CT Scan
done, and I'm praying it will be in remission. The only problem I did
have just two weeks ago I got sick with bronchitis, and the z pack
didn't get ride of it, so they had to put me on something else. this is
a very scarry disease to have, and i feel bad for everyone that has it.
i have my days where i'm very tired, but for the most part i'm doing
alot better, and i am very thankful for each good day that i have. i
know that i have this disease, but i won't let it take over me, i ask
god to get me through each day, and he has. some days are a struggle,
because my husband works 12 hour shifts and i have a 2 year old and a 6
month old, but i get through it. i know i'm not back to normal, but i'm
very thankful that i'm feeling much better. my joint pain in oct was so
bad that i couldn't move out of the bed, i couldn't get up out of the
bath tub. now i don't have any joint pain. for those of yall that are
going
through this remember god is good. may god bless you all! i pray they
find a cure for all of us.
Name: Keith Bigland
Email_Address: keith.b@uksarcoid.org
From: UK
Found_Us_Via: Linked Site
Date: Friday, January 01, 2010
Time: 09:40 AM
Comments:
How can I say how sarcoidosis affects me? Well, I am unable to work,
cannot concentrate, cannot walk in a straight line or for any distance,
get easily confused, ache, shake and constantly in pain. What I can do
is help make others aware of sarcoidosis hence along with a few others
we created an information site which won a S.O.S. award for clarity. My
latest attempt is to created the largest sarcoidosis petition in the
world for the world's governments and health officials to take note. It
started on 1st January 2010.
Best wishes, Keith Bigland
Name: MC Johnston
Email_Address:
maryclaytorjohnston@yahoo.com
From: Greemville, SC
Found_Us_Via: Internet Search
Date: Wednesday, January 06, 2010
Time: 02:10 PM
Comments:
Is anyone pregnant with Sarcoid? I may have to take Prednisone but am
resisting it because I want to have a baby first and then get on it if
absolutely necessary (am not pregnant now but trying). My dr. is going
to keep an eye on me and has scheduled another lung function test and
xray for April to see if my lungs have gotten worse. I am really
hesitant to get on Prednisone while pregnant as the complete side
effects to a baby in utero are not known...Hope everyone has the
healthiest 2010 as possible!
Name: Tessa C
Email_Address:
tess_mck@hotmail.com
From: Sydney, Australia
Found_Us_Via: Internet Search
Date: Wednesday, January 06, 2010
Time: 09:36 PM
Comments:
Im 22 years old and was diagnosed with Sarcoidosis two weeks ago. For me
this has been a three year battle. When I was first admitted to hospital
three years ago I had chronic phnuemonia, grossly enlarged spleen,
severely anaemic and very enlarged lymph knodes in my chest, stomach and
the heart region. Tests were conducted and found that i was also IGa and
IGg deficient. Doctors thought I had Lymphoma, but after weeks in
hospital and muliple scans and biopsies, cancer couldnt be found. They
even took my spleen out becuase it was so enlarged. Still after testing
my spleen and taking bone marrow results kept comming back inconclusive.
I was diagnosed at that time with Common Variable Immune Deficiency (CVID),
Bronchiactisus and had a splenectomy. The only thing that they could do
was treat me for the symptoms. So for the last 3 years I have been on
endless medication and monthly doses of Intragram given intraveniously
at the hospital. Everything seemed to be going ok up until 5 months ago.
I became very very exhausted, Slept all the time. Aching joints,
headaches, blurry eyes, very weird blood results ect. They thought it
could of been Lymphoma AGAIN!! Had another lymph knode biopsied which
showed a rare fungal infection, was rushed to hospital for immediate
treatment. I was on fungal treatment for 4 weeks when things got even
worse. My lymph knodes had tripled in size and the inside of my lungs
were covered in lesions all within a 4 week period. Had a broncoscopy
which showed nothing, then finally I got another biopsy of the lymph
knodes in my chest and the lesions in my lungs. I finally got a call to
say that I had sarcoidosis after three years of not knowing. They
discovered that it had spread to my eyes and am waiting to see if it had
gone to my brain. I have currently been on steroids (Pretesone - 50g
daily) and several other meds for two weeks, I am feeling alot better,
and the only side affects that I am having from the steroids is that my
skin is getting very thin and bruising very easy and that i am VERY
hyperactive. Im sure that longer term use will cause more side affects.
I can only sleep about 5 hours a night and the rest of the time i am on
my feet doing stuff. Its starting to get really annoying..I cant stop
talking..lol.. Is anyone else experiencing this?? So at this point in my
life i have been diagnosed with ongoing 2 immune diseases, a lung
disease and have had my spleen removed. I was wondering if there was
anyone else out there who has sarcoidosis and has had their spleen
removed or has CVID?? As doctors dont know much about this condition I
would really like to hear from someone who can give me a better picture
of what might lay ahead. I am really concerned as i have the other
medical conditions in combination with sarcoidosis. Also I have heard
that there are links between sarcoidosis and Lymphoma, does anyone know
if this is true?? I am really tired of being 22 years old but feeling
like im about 60. This has really impacted on my life, I have had to
take long term leave from work and when i do go back I will have to go
back part time. How common is it for Sarcoidosis to return and what are
the triggers?? Please email me...
Name: Crystal
Email_Address:
crystal_pound@yahoo.com
From: South Bend , Indiana
Found_Us_Via: Internet Search
Date: Sunday, January 10, 2010
Time: 04:50 PM
Comments:
I am a 37 year old female with four children, divorced of two years in
April. I was married for seventeen years. I had went to my doctor which
had diagnosed me with depression and hormonal imbalance. I read all the
2010 comments and stories and it sounds like myself. I as well was
diagnosed with sarcoidosis in August of 2009. Before having the spine
surgery I had to have, I was working two jobs trying to take care of my
children. I was on call for the hospital one weekend and got called in.
When I stood up to go get dressed I ruptured two disc in my back,
landing me in the hospital February 6th, 2009. I had to have lumbar
fusion surgery on three levels. When I woke up I felt as if I had been
fillet like a fish. They had opened both front and back of me to do the
procedure, but I must say in having the procedure done my lumbar pain is
tolerable most days. To make a long story short, a week after spine
surgery I had to have a chest x-ray done because of severe chest pain.
So while I am trying to recover from surgery I am trying to figure out
what the heck was wrong with the rest of my body. Like most of the
stories I read I also feared lymphoma. Being in the medical field all of
your career does you no justice, trust me. I was an endo tech./GI tech
and a medical assistant. So I knew alot about the human body, but never
had I heard of sarcoidosis. I hurt all over, my feet and hands stay
swollen, my eyes get blurry, I lose my train of thought all the time,
and all I want to do is sleep. The doctor I was referred to did a biopsy
and finally after six months diagnosed me with sarcoidosis. Since my
diagnosis I have lost both jobs due to inability to work, I am drawing a
disability check from insurance I paid out at one of my jobs for eight
years, in which I lose after the twenty first of this month, I have lost
my medical coverage that I had. Now I cant afford my prescriptions or to
go to the doctor. I feel this painful disease is getting worse in my
body, and I have no clue where to go or what to do. I feel that I am at
a loss. I have even went as far as to ask my ex-husband for financial
help. He laughs at me and says nope and good luck. So if anyone can
please tell me what to do or where to go I would so much appreciate it.
I'm scared Sincerely, P.S. My symptoms feel like there worse than when I
was first diagnosed, They never said if it was in my brain or eyes. They
just said my lungs. They gave me an inhaler That does not seem to be
helping me. Crystal
Name: Renee Anderson
Email_Address:
imolilac1024@hotmail.com
From: Ohio
Found_Us_Via: Internet Search
Date: Monday, January 18, 2010
Time: 01:43 PM
Comments:
I am 33 years old and just diagnosed with Sarcoidosis. Back in june I
had pneumonia and they found my lymph nodes in my chest were enlarged.
thinking they were reactive but not sure my dr decided to watch them and
do follow cts to watch the size. they did not go up or down in size from
june thru dec so my pulmonologist referred me to a surgeon. I had a
medistenoscopy almost 2 weeks ago. my dr said since I'm not having
symptoms now he will not need to treat me. I have to let him know when I
have a flare up and then we will talk about treatment options. I have 2
little girls I have to take care of so I pray this disease does not keep
me down.
Name: Robert S Young
Email_Address:
rsyoung8@gmail.com
From: Bountiful, Utah
Found_Us_Via: Internet Search
Date: Thursday, January 21, 2010
Time: 02:27 PM
Comments:
I was diagnosed with sarcoidosis last fall (mediastinal biopsy). I had
sporadic night sweats then. For the past month I have been experiencing
night sweats every night. Could this mean a change in the stage of my
sarcoidosis?
Name: Kay Zimmerman
Email_Address: kzla@hotmail.com
From: Silver Spring MD
Found_Us_Via: Internet Search
Date: Tuesday, January 26, 2010
Time: 03:48 PM
Comments:
Can anyone recommend a dermatologist in the DC/MD area who could tell me
if a persistent rash is caused by my sarcoidosis and can be treated? I
appreciate your contacting me with any referrals. Thanks, Kay
*Admin. Message- Try the
Dr. Database:
The worldwide directory of Sarcoidosis Physicians.
It may help.
Name: Jenny from Australia
Email_Address:
c31985@hotmail.com
From: Australia
Found_Us_Via: Internet Search
Date: Wednesday, January 27, 2010
Time: 12:27 AM
Comments:
Hi all, Please anyone reading this...please respond! Have you been put
on steriods (currently or previously)? If so what was your dose and how
long did it take for you to notice effects? Even if you did not get any
effects from steroids I would like to know - what was the dose and how
long were you on it before the doctors said it probably wasn't working?
I have been on prednisolone for 5 weeks today and no change at all. My
symptoms seem to go up and down on a daily basis and change within the
day. I can wake up and feel ok but then it gets worse during the day. My
foot has been burning so bad over the past week that I can barely stand
it. I wrap it in a sock and compression bandage but that does little to
relieve the plaguing sensation. I have my first review next week and I
am concerned about what my doctor will want to do. I am not too keen
about increasing my dose, especially when doctors seem to just throw
medication at you with little worry. I am concerned about using
Methotrexate or Chloriquine because I have some issues with my liver and
am worried about liver failure. I am wondering about my treatment
options at this point. Staying on steroids for another 6 weeks may be
the way to go, but after this if there is no improvement then I don't
see much point in continuing with them, especially since the steroids
can come with a whole range of problems of their own. I would appreciate
a quick reply from anyone who has been on steroids and can give me some
information about their experience. Thanks for all your help to everyone
on this site and to those who have contacted me before. What a baffling
disease! I hope our immune systems realise the trouble they are causing
and get back to normal ASAP!!!
Name: J. Worrell
Email_Address:
kamworrell06@yahoo.com
From: Virginia
Found_Us_Via: Internet Search
Date: Sunday, January 31, 2010
Time: 09:22 PM
Comments:
Hello Everyone, My name is Jewell and my mother was diagnosied with
sarcoidosis in 2001. I was young then so I really didn't know what it
meant. Recently we have heard news of an eye condition called Uveitis.
This was an awakening call to me to learn more about the disease and
find more info that can help me help my mother. I don't really know
where to start and would appreciate any help I can get. I have been
researching on the internet and checking out books in the library, but I
would like to have more info. I have to explain sarcoidosis to my
mother, siblings, and children. I want everyone to be well informed
about what is going on and I need to be able to help my mother the best
way I can. If anyone can help please contact me, I would greatly
appreciate any help given. Thank You All
SOS-NOW ON FACEBOOK!
February 2010
Name: Tobias S
Email_Address:
frambe@getmail.no
From: Norway
Found_Us_Via: Internet Search
Date: Wednesday, February 03, 2010
Time: 09:28 AM
Comments:
Hi, I had a lung inflamation problem some years ago with fever and short
breath. I took a lot of tests but it was never concluded what my problem
was. They suspected Hypersensitivity pneumonitis (extrinsic allergic
alveolitis) but I do not fit with the profile of people that normally
get this desease (farmers and bird breeders). However, I got better and
now this problem is rare. However, last 6 months I have an increasing
problem with urticaria. I also sometimes get a painful version of heart
burn that I find is best treated with Zyrtec. I also sometimes get
swollen lips. I am questioning myself if this combination of different
symptoms may indicate sarcoidosis or if it just indicates that I have
unknown allergies. I am positively tested for allergy of birch pollen
and bed mites, but not for any other allergy (and I did a lot of tests).
Any views on this and how I can find out if I have sarcoidoses or not?
Name: Pedro de Jesus
Email_Address:
pldejesus@yahoo.com
From: NYC
Found_Us_Via: A Friend
Date: Thursday, February 18, 2010
Time: 03:54 PM
Comments:
I have sarcoid of the lung and lymnoids of the chest. I am looking for a
Dr in New York City or North Carolina to determent if i have sarcoid of
the Larynx. what is the treatment for sarcoid of the Larynx?
Name: sandydee
Email_Address:
ustoowichitachapter@sktc.net
From: Wichita Ks
Found_Us_Via: Internet Search
Date: Friday, February 26, 2010
Time: 08:08 PM
Comments:
I have just learned I have Sarcoidosis, after having a biopsy of the
lungs. After much time on the net for natural cures and or treatments, I
would like to ask if anyone has heard of or has used a product called
Serrapeptase? I was first told I had stage four lung cancer, then my
biopsy came back with the Sarcoid report. Please answer if you have any
thing on this product Thank you Sandy
Name: Klynn G
Email_Address:
kmg_215@hotmail.com
From: Washington State
Found_Us_Via: Internet Search
Date: Sunday, February 28, 2010
Time: 12:37 PM
Comments:
I was diagnosed with sarcoid in August 2009. My symptoms started with
sore, red lumps on my legs and sore joints. I was struggling with
EVERYTHING! It got to the point that I had to ask for help to get out of
bed and get dressed. I couldn't pick up my daughter(she was 1 yr at the
time) and started going into depression because I felt like a failure as
a mom. I was prescribed prednisone (15mg for a week, 10mg for a week
then dropped to 5mg for a total of 2 months) and ibuprofen for the pain
and swelling. While I was taking the meds I felt great,but once I ran
out of meds the nodules on my legs started coming back and the pain came
soon after. Dr. prescribed more prednisone but doubled the dosage. This
time the meds lasted for about 3 months... and now everything is coming
back again. I have an appointment to get a biopsy on one of the nodules
on my leg next week, but I can't take my prednisone until after. My last
doctor also prescribed methotrexate in conjunction with prednisone, and
I have had 2 panic attacks in the last 3days. Has anyone else had a
problem with panic attacks on either medicine or while taking them both?
SOS-NOW ON FACEBOOK!
March
Name: Constance
Email_Address:
constance.hazell@yahoo.com
From: new York
Found_Us_Via: Internet Search
Date: Saturday, March 13, 2010
Time: 07:17 PM
Comments:
My name is Constance, and I was diagnosed with Sarcoidosis last October,
2009 after being being extremely ill for about 5 months. I saw about 4
doctors before I was properly diagnosed. At that point I had been
coughing non-stop for about three months, lost 62 lbs, had pain in every
joint and could not dress or bathe myself. I would go to work, close my
office door and lay on the floor for hours. I also completely lost my
taste for food and only could eat fruit and drink water. A diagnosis was
made after doing a blood test, several MRIs and a biopsy on my lungs and
pancreas. I have swollen lymph nodes in my lungs, pancreas and eyes, and
my skin is also affected. I am being treated with Prednisone, but very
concerned about the side affects also the skin lesions come back every
few weeks. I suggest asking your doctor to test you if you have any of
the symptoms I mentioned
Name: Diana Slager
Email_Address:
frecklez30@yahoo.com
From: Illinois
Found_Us_Via: Internet Search
Date: Monday, March 15, 2010
Time: 11:27 AM
Comments:
I am A married mother of 2 boys I got sick end of April 2009 had a cough
that just wouldn't go away then the Dr.s thought i had a hernia and sent
me for an x-ray. I was told they found a spot on my left lung and they
did a ct scan with dye right away. Was then sent for a biopsy which
resulted in a collapsed lung. Sent me home 2 days later back in er cause
i couldn't breathe. Two chest tubes later and a week in hosp. still was
unsure what was wrong. Another biopsy, pet scan still didn't know. Dr.'s
thought possibly lymphoma. Ended up with a fever of 104 for over a week
round of antibiotics and still not feeling better, went back to er they
admitted me told me I had air in my liver and they were going to take
the right side of my colon and give me a colostomy bag. Thank god they
were wrong they just took my appendix (nothing wrong with that though).
Eight weeks later had a thoracotomy another chest tube and then the Dr.s
diagnosed me with Sarcoidosis. I understand I will never be cured but
pray for my children's sake they never feel this pain. My joints hurt I
can't play with them the same because I can't catch my breath. And was
wondering if factors of my father being subjected to agent orange didn't
contribute to this. Lets help find a better cure than steroids
Name: AmyLynn
Email_Address:
alburke03@yahoo.com
From: Buffalo, NY
Found_Us_Via: Internet Search
Date: Wednesday, March 17, 2010
Time: 02:45 PM
Comments:
I am a 34 year old white female and was just diagnosed with Sarcoidosis,
after suffering with symptoms for over 3 years. It started in my wrists,
and gradually moved to my legs, where I was initially diagnosed with 2
sprained ankles and directed to wear Swede-o braces which were
excessively painful to get off and on. After demanding a referral to a
rheumatologist, I was told it was rheumatory arthritis/inflammatory
arthritis and started receiving cortizone injections directly into both
ankles and had various other medicines such as Prednisone, Methotrexate,
Oxyprozen and Humira injections. I was ultimately diagnosed with
erythema nodosum after trying my luck with another rheumatologist. I had
a really tough time with the side effects of Prednisone, particularly
major hip pains and aching, which did not leave once use of the
Prednisone was discontinued. About 2 years ago, I woke up with a blood
red eye and made an appointment immediately with an eye doctor, who
eventually referred me to a retina specialist, who diagnosed uveitis and
with whom I started receiving Avastin injections. Since my husband and I
are attempting to start a family, I can no longer use the Avastin and
requested a referral to the Cleveland Clinic for more help. Nobody could
tell me what was causing all of this inflammation until now. A chest CT
confirmed the Sarcoid diagnosis with multiple enlarged lymph nodes. I'm
not sure what my future holds now and am a bit scared. But I am thankful
to finally have the answers to questions I've been asking for so long
since, other than the symptoms described above, I am generally healthy!
Name: Ben den Holder
Email_Address:
bendenholder@gmail.com
From: Belgium
Found_Us_Via: Linked Site
Date: Sunday, March 21, 2010
Time: 01:43 PM
Comments:
I was diagnosed 2 years ago (doctor thought I had lung cancer and gave
me 2 months to live)But I have had this condition a lot longer and can
live with it. I try to go running once or twice a week, still work,
still work in the garden as well as lots of other stuff. Looking around
for natural remedies because I don't feel like swollowing a lot of
chemical rubbish. So if anyone knows of anything let me know. On another
forum I noticed someone was taking turmeric and someone else tea tree
which seemed to help a lot. Thanks Ben
Name: Sweet Sadie
Email_Address:
sadiearchie@yahoo.com
From: Tampa
Found_Us_Via: Linked Site
Date: Monday, March 22, 2010
Time: 11:30 AM
Comments:
I would like to say to all those who are fighting Social Security for
their disability due to a rare disease, DON'T GIVE UP! I was a Social
Worker and I loved doing my job however, due to my condition I may no
longer expose myself to others. I've been fighting SSI for almost 3
years now and my condition is not going nowhere until I die. I am in
stage 3 of sarcoidosis unfortunately so returning to work is not an
option, only a dream. God Bless Everyone!
Name: Katie Rankins
Email_Address:
havehope08@hotmail.com
From: Toronto, Ontario
Found_Us_Via: Internet Search
Date: Wednesday, March 24, 2010
Time: 10:59 PM
Comments:
I am 19 years old, and I was diagnosed with sarcoidosis around the age
of 11 or 12. Back then I use to have the regular redness and bumps on my
legs and arms quite frequently. As I grew older it still came back here
and there, but then I found out that it had caused inflammation in my
eye. Now, I am suffering from eye pain, redness, and headaches. I just
started medication to calm down the inflammation, but I am worried. I
hope everything gets better! Does anyone else have the same problem?
Please reply back! - Katie.
Name: kathleen Manser-Groch
Email_Address:
voodoo623@verizon.net
From: Philadelphia PA
Found_Us_Via: A Friend
Date: Friday, March 26, 2010
Time: 11:59 AM
Comments:
I was dx with sarc in 1999 and have had so many different symptoms from
this disease...but this is a new one for me. Has anyone else had this
happen? While driving home on Friday night and my right eye started
seeing the traffic light in wavy threes, then I was seeing traffic in
wavy threes etc. I drove home with my right eye closed. By the time I
got home (about 7 minutes) the symptom was gone. Now I am noticing my
right eye is larger than the left eye. It seems to protrude more than
the right. Above the right eye, right under the brow is puffy, it also
tears a lot. I made an appointment with my Neuro-ophthalmologist, I go
on the 20th of April. I say it is the sarc but never read of this event
before. Thanks for listening.
Name: brandie
Email_Address:
brandie_williams69@yahoo.com
From: pearland
Found_Us_Via: Linked Site
Date: Friday, March 26, 2010
Time: 03:28 PM
Comments:
my lung dr is not skilled to treat my sarcoid lungs i need a sarcoid
specialist please advise before i die. tired of dumbass drs who dont
care how sick or how much pain we are in! 281-741-0644
Name: Cindy McCall
Email_Address:
freetobeme03@gmail.com
From: missouri
Found_Us_Via: Internet Search
Date: Saturday, March 27, 2010
Time: 09:01 AM
Comments:
OMG, I cant believe that theres people out there just like me, this site
is amazing. I was diagnosed with neurosarcoidosis about a year ago,
after five years of being completely miserable. I have extreme fatigue,
shortness of breath, heart problems, memory lapses, muscle and bone pain
and weakness, swelling of joints, visual disturbances, tremors and
balance problems. I had actually begun to think I was crazy because
doctors couldnt find what was wrong, and the symptoms were getting
progressively worse as time went on. My doctor started me on 40mg of
prednisone, then started reducing the mg, every time we get under 30mg
my symptoms return and my ACE level goes up. Of course I havent read all
of the entries here but I havent read any messages that talk about the
embarrasment that neurosarcoidosis causes. I hate going in public when
my symptoms are active, my head and hands shake uncontrollably, I walk
like I'm dead drunk, my coordination is off. I am just so embarrased I
don't hardly go out anywhere anymore and have lost all my friends.
People invite me out to eat, but that is the worst. I hide the worst of
my symptoms from everyone because I feel like such a freak when they're
real bad. I'm sure this is a problem for others too so I'd like to know
how you cope with it.
SOS-NOW ON FACEBOOK!
April
Name: mrs s singh
Email_Address: savys9@gmail.com
From: south africa
Found_Us_Via: Internet Search
Date: Monday, April 05, 2010
Time: 05:34 AM
Comments:
hello i have been diagnosed with sarcoidosis in feb 2009 currently on
azapress100mg prednisone20mg oxygen daily but stil very tired can u help
cause doc says that he cannot do anymore besides continue with meds and
regular blood tests
Name: Lindsey
Email_Address:
lbfaulkner@yahoo.com
From: Arkansas
Found_Us_Via: Internet Search
Date: Tuesday, April 06, 2010
Time: 12:55 PM
Comments:
My name is Lindsey, I was diagnosed with sarcoid about 5 years ago. I am
currently not on medication. I had a lymphnode biopsy and it had
granulomas in it. I was sent to rheumatologist and she keeps testing my
lungs and urine. I never have any thing wrong with my lungs, but my
urine calcium levels are always high. I have night sweat REALLY bad and
instead of assuming its from sarcoid she keeps saying its probably my
birth control or she tests me for tuberculosis. My eyes were fine when I
was tested a few years ago. But since she wont test any other part of my
body but my lungs, I'm afraid that its in another serious area, but I
wont ever know. I have mild joint pain also, usually in my lower back.
Has anyone else had these symptoms and what tests were run on you?
Thanks
Name: Krista Weigel
Email_Address:
weigelmom@charter.net
From: Holmen, WI
Found_Us_Via: A Friend
Date: Wednesday, April 07, 2010
Time: 09:58 AM
Comments:
HELP…that's about all I can say at this point. My husband was diagnosed
3 years ago with Sarcoid at age 29. Two years ago he was told he had
fibromyalgia and shortly after that kidney cancer. The cancer was
removed and is in remission but sarcoid was found in the portion of the
kidney that was removed. I also believe that he is depressed. At age 32
(next month) he is already disabled (on Social Security) and had to quit
his job because of the pain and meds that he’s on. We have tried just
about everything out there, Methotrexate, Gabapentin, Amitriptyline,
Nucynta, Plaquenil, Piroxicam the list goes on. Currently he is on
Lyrica, Fentanyl, Hydrocodone, prednisone, Seroquel and then a gamete of
other meds for the side affects i.e. high blood pressure, gastro
problems, sleep. I guess I’m wondering what has worked with others. Has
anyone had success with Enbril, Remicade or Cyloxan with active or non
active sarcoid and FM? Please post or email me…I’m at the end of my rope
and our Rhume isn’t helping much and our family doctor feels as if she
would be crossing a line if she tried these meds…I work full time, take
care of him and our 4 year old. I don’t know how much longer we can go
on like this. Thanks for any information or advice.
Name: Kimmie Renee
Email_Address:
rklacy@sbcglobal,net
From: Missouri
Found_Us_Via: Linked Site
Date: Friday, April 09, 2010
Time: 03:10 PM
Comments:
nice to have someone who understands
Name: Lauren A.
Email_Address:
ilovemassage22@yahoo.com
From: Louisiana
Found_Us_Via: Internet Search
Date: Friday, April 09, 2010
Time: 08:35 PM
Comments:
I have been recently diagnosed with sarcoidosis. It actually showed up
as a white spot on my tongue. The doctors that I went to had never heard
of or seen that in their practice. Has anyone ever experienced this? I
had been going to an internal medicine doctor to try to figure out this
extreme fatigue that I had been having. I can't even remember the last
time I haven't been tired. And it doesn't matter how much I sleep , it
never seems to ease up. Along with brain being foggy. I ache all over,
especially in my joints. Everything feels like I'm picking up 50 lbs
sometimes. Sometimes I have good days, but it seems like I have more and
more bad days than anything. I had been through a handful of doctors,
most just thought I needed more sleep, or I was depressed. Some of them
even thought I was crazy. By luck I got a lesion pop up on my tongue,
don't even know how long it had been there. Went to an ENT , did a
biopsy, and Sarcoidosis is what they found. I'm just so happy to have an
answer finally. But I know it is just the beginning. I am currently
looking into a specialist. Does anyone have one to suggest? Any
information would be helpful and much appreciated. Glad to know there is
a place like this that understands what I've been going through.
Name: Donna Jean
Email_Address: deee0912@aol.com
From: louiville,ky
Found_Us_Via: Internet Search
Date: Tuesday, April 13, 2010
Time: 10:49 AM
Comments:
I am in the process of having testing done to confirm sarcoidosis. To
date I have had blood work, chest xray, pulmonary function test and a
EKG which all came back normal. I am waiting to see a pulmonologist next
week. I have skin problems and had 3 biopsies taken that came back as
granulomas. I have a dry cough at nite sometimes but no pain anywhere. I
have acne on my face and red spots on my elbows, ankles, arms and legs.
I have had the skin problems since October. I apply 3 different types of
creme each day twice a day. What can I expect from this disease? Thanks
for any help on this!!!
Name: Sherimommie
Email_Address: sheri@pectol.com
From: Utah
Found_Us_Via: Internet Search
Date: Thursday, April 15, 2010
Time: 06:43 PM
Comments:
My diagnosis came in 1998 after two trips to different emergency rooms
for severe abdominal pain. The first time I was sent home with pain
pills for “flu” and iron for anemia. The next day, after the pain pills
wore off, my son took me into the city to a “real” hospital. I was soon
in emergency surgery to have a portion of large intestine removed which
had perforated. During that hospital stay I was told that x-rays reveled
spots in my lungs, liver, kidney and spleen as well. Of course that
means the big C WORD!! Fortunatly, a couple of weeks later after tests,
the results were in … Sarcoidosis. What?!! No one I knew had even heard
of it. Since that time I have discovered a lot about this disease. Here
are some of my thoughts. · Many (most?) doctors don’t know much about
it. · Many will pass off your complaints as unimportant or unrelated. ·
Trust your gut – you know your own body. · I suspect a great many of the
varied “conditions” sarcoid sufferers have are, in fact, related to
sarcoidosis. These include arthritis, extreme fatigue, diabetes,
nightsweats, generally feeling ill, headache, diverticulosis,
gastrointestinal woes of all sorts, dizziness, loss of vision... Well
the list goes on and I admit we do sound like nut cases. But the pain is
real. · I suspect there is something in our environment, what we breathe
or eat or drink – something – that has our own immune system on the
attack and that is the key. · Everything we know about a healthy
lifestyle really does help. Keep your weight down. Leave “processed”
food alone as much as possible – there are a multitude of additives that
could cause you problems. Stay active. Keep a positive attitude. Find a
spiritual center. Don’t drink. Don’t smoke. Don’t use drugs .. and be
very careful of the prescribed ones too. · Doctors are still just
“practicing” medicine, but they are the best resourse we have so use
them. · Thank God for the access we have to medicine but remember drug
companies have to sell their drugs. Money is the bottom line. · In the
end, you don’t get to choose all your circumstances in life but you do
get to choose your attitude and that makes ALL the difference.
Name: Maureen Gay
Email_Address:
gaypinkgirl@aol.com
From: Riverside, California
Found_Us_Via: Internet Search
Date: Wednesday, April 21, 2010
Time: 08:39 PM
Comments:
I was diagnosed with Sarcoid in 02. It took 6 years of going from doctor
to doctor with symptoms before I took it upon myself to pay to have a
body scan done on my own. After my body scan showed clusters of nodules
and scarring in my lungs a lesion on my liver, severe inflamation in my
chest and lesions in my abdomen...I was then finally taken seriously. I
had a biopsy and got the diagnosis. I have all the symptoms that have
been listed on here but in my case I have never got into remission or
had any relief from the fatigue, chest pain, joint pain, pain in my
lymphnodes including the groin. Right now, I am writing on here to see
if anyone is getting severe chest pain. I had to go to the ER the other
night because it is so bad. Of course, most doctor's know nothing about
our illness and don't know the first clue of what to do. It hurts really
bad on the left side. I have always gotten chest pain but not like this.
Something has changed because it's not going away. It has been a week
now in constant pain. It goes from behind the heart all the way to the
bra line in my back. Sometimes it's a stabbing feeling, other times it
is a burning feeling (not like heartburn) or it is a dull pain. I am
getting worried cause I don't have insurance. I can barely get through
work each day. It's just not going away. Hurts when I breathe in. They
said I don't have a collapsed lung or anything. I'm about to jump off a
cliff with this pain. Anyone out there have this?
Name: Gwen L.
Email_Address:
dalmstls21@yahoo.com
From: Pittsburgh Pa.
Found_Us_Via: Physician Referral
Date: Monday, April 26, 2010
Time: 01:16 PM
Comments:
Hi everyone I am newly diagnoised with sarcoid and I have a sister who
died from this in 1993 at the age of 33. Needless to say I am afraid. I
have witnessed first hand what the disease can do. I would like to reach
out for support and I would like to be supportive of others also. If
there is some one in the Pittsburgh area who would like to chat or
anyone else for that matter please respond. My fear is starting to get
to me. Looking forward to hearing from you. Thank God for this forum I
really feel better just knowing that this is available to me and others
like myself.
SOS-NOW ON FACEBOOK!
May
Name: Eric Gorrell
Email_Address:
gorrell_eric@yahoo.com
From: East Liverpool, Ohio
Found_Us_Via: Internet Search
Date: Saturday, May 01, 2010
Time: 01:10 AM
Comments:
Hell Im 22 I was diagnosed with Sarcoid about 6 years ago. I have it in
my lings. I was sick for about 2-3 months. I couldnt sleep, eat, barley
walk. It was horable. I since have had no symptoms of this disease. i
still have alot of scar tissue in my lungs, but nothing else. My lung
specialist said he truely believes that my sarcoid is gone and will
never return. There is hope for people with this nasty disease. He said
that 40-50% of people with it may never have symptoms again. So good
luck to everyone And never give up there is always hope. I you have any
questions email me.
Name: vickie blackwell
Email_Address:
angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 04:48 AM
Comments:
I have wanted so much to learn more of this disease yet have been
struggling every day in dealing with it as new symptoms have been
occurring lately and I have to find the best methods of approach to
take. This website just this one time visiting; has helped me in so many
ways. Vickie
Name: vickie blackwell
Email_Address:
angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 06:38 AM
Comments:
I am so glad that I found this website so we can work on this illness
together and try to come up with ways of beating this disease! I was
diagnosed with this illness last sept. 2009 and have been through alot.
Doctors don't quite fully understand it so feeling like a lab specimen
is common and the family cannot relate so this web site will help them
understand what I am going through. I believe that we can get to a road
of recovery with much self discipline which is what I am in dire need of
now and self motivation towards full recovery. I am so medicated and am
developing more problems such as diabetes, muscle numbness and pain,
sleep apnea which means more meds, tests and minor surgeries. I am sure
that once I can stay focused I can become a fully recovered sarcoid
patient. I believe it starts with faith, meditation, yoga, healthy
eating habits, getting rid of the bad habits, researching holistic
medicine with the goal of getting of the steriods, pain meds and many
others, eating things high in antioxins, omegas, taking herbs,
meditating, visiting a spiritual healer, maybe a psychotherepist,
finding something to do that helps make the world a better place and
doing our part to helping others, keeping a possitive outlook and making
family a priority after self. Right now I hate myself because I have no
one to share this with whom understands. I have gained so much weight,
sores on body, tired but can't sleep, feeling worthless, can't stay
focused, in pain on too many meds in bed alot can't get motivated and
hating on others. I have been spending so much money on meds and testing
also apts. that I have nothing left to spend on all the things that are
good for me. I will get there and find natural methods of healing and
share what I have learned and what helps. I am currently having weird
shaking fits, tightening of muscles, and have no idea how to deal with
diabetes. Every time they cut steriods down I become ill and they can't
understand how 5 mg. can make a difference. Thanks for listening,
Sincerly, Vickie
Name: Maria Pita
Email_Address: mipita@yahoo.com
From: Caracas, Venezuela
Found_Us_Via: Internet Search
Date: Monday, May 10, 2010
Time: 08:34 PM
Comments:
My sister-in-law has been diagnosed with pulmonary sarcoidosis. We are
looking for a specialist in Venezuela or Colombia. If you can recommend
one, please e-mail me. Many thanks.
Name: derrick
Email_Address:
d.sanders77@hotmail.com
From: alabama
Found_Us_Via: Internet Search
Date: Wednesday, May 12, 2010
Time: 11:08 PM
Comments:
I am a 33year old African American male veteran I was diagnosed with
sarcoid in 1999 did the whole prednisone thing everything was fine for a
while but overtime I have experienced aches everywhere unexplained
bruises and memory loss I went from a athletic football player to not
being able to get out of bed my ex wife was diagnosed with fibromyalgia
before my diagnosis I was wondering if there was some possible
connection between the two has anyone else had a similar story. thx god
bless
Name: OnlyGodKnows
Email_Address:
lilmissred_20@hotmail.com
From: Oklahoma
Found_Us_Via: Internet Search
Date: Thursday, May 13, 2010
Time: 02:26 PM
Comments:
my husband has sarcoid, it is in his spine, tested by mri. He has gained
a lot of weight from using prednisone. He was not able to get out of bed
at all for 6 months. Soonercare finally approved to go to hospital. His
blood sugar has been really high. He lost a lot of weight a few years
ago. Lesions on his eyes in the past. Lesions in stomach. very weak
legs, no movement. numbness. Leg stays at a bent angle. Had gotten a
very bad bed sore on ankle from its position not wanting to move. Just
more insight from another person with sarcoid.
Name: jamie bass
Email_Address:
jamiebass@yahoo.com
From: caraway arkansas
Found_Us_Via: Online Support Group
Date: Thursday, May 13, 2010
Time: 03:22 PM
Comments:
i was diagnosed w|sarcoids 2 yrs. ago it was in stage 1. i still have
symptoms i worry about weakness and my eyes, i also have nerve damage on
right side of my face due to bells paulsey from sarcoids. i feel lonely,
like no one else understands the pain and stress i deal w.im a mother of
2. oldest 16 youngest 8.this has affected their quality of life,i try to
be strong but i just do not have the strength i use to.my sarcoids comes
and goes. im tired allm the time and the ability to work and help my
husband is just gone its all i can do to clean the house do chores and
keep up with kids.i need a friend who knows what im going through.
Name: Katie Lo
Email_Address: fithgirl@aol.com
From: Texas
Found_Us_Via: Not Really Sure
Date: Thursday, May 13, 2010
Time: 11:25 PM
Comments:
Hello to All, Its been a long time since I have checked in. I have
suffered with sarc for about 13yrs now. It seems to be relentless with
me. I can hardly walk without giving out of breath. It is so
disheartening. I am on a plethora of medicines that seem to help in some
ways but there are so many other issues. I have sarcoid in the lungs and
on the skin, bags at the corner of my eyes that leak. I guess I am
writing because I am sick and tired of being sick and tired.
Name: Florence Magnusen
Email_Address:
fmagnusen@gmail.com
From: Tulsa, O K
Found_Us_Via: Internet Search
Date: Monday, May 24, 2010
Time: 10:36 PM
Comments:
I am 60yrs old and I have suffered with sarc since I was 54yrs old. The
back pain was beyond description, and I was on oxygen night and day. The
last 2yrs I have been in remission (or the pain was more manageable and
I am no longer on oxygen) but as of late the pain has gotten worst and I
am beginning to get scared. I know my doctor will not increase my
vicodin which I am currently taking to control the pain. I read online
of a supplement that might help pain due to inflammation (especially of
the joints) Well, I discovered further that it contained 6 ingredients
in back pain relievers. Has anyone used this product for sarc back pain
and did it work for you? Or if you have any advice as to a supplement
that might help would you advice as I don't want to take any drugs if
possible.
Name: Judith Riley
Email_Address:
judyr808@gmail.com
From: OR
Found_Us_Via: Not Really Sure
Date: Friday, May 28, 2010
Time: 02:21 AM
Comments:
I have been reading messages written on this sight for several years
now. I have had sarc. for 15 years. Just today I got back the results of
some blood work done and found out that my body is low in phorphorus. I
looked it up on the internet and found some symptoms I have and some I
don't. I was wondering if anyone else has this too. I hate going to the
Dr. or have labs done because I don't to know I have something new to
add to the list of effects sarc. has on my body.
Name: Jackie S.
Email_Address:
jacqueline.staples@rotech.com
From: Louisiana
Found_Us_Via: Physician Referral
Date: Friday, May 28, 2010
Time: 04:46 PM
Comments:
I was diagnosed with sarcoid 10 yrs ago. Primarily in my lungs but has
affected my skin, eyes, joints and lymph nodes. dr put me on steroids,
that lasted about maybe a month, couldn't take it so I just basically
let it run its course. Fatigue, pain, shortness of breath, lesions on my
face, belly, back and arms. I had to have cataract surgery a year ago
and now the other eye seems blurry. Have pains in my stomach and have
been seeing several drs over the years. My lymph nodes are even bigger
and putting pressure on my stomach so the dr has talked to me about
taking cytoxan and will be monitored on weekly basis. they say sarcoid
can go away but my seems to be getting worse. Does anyone out there take
Cytoxan? I may start end of June, a little hesitant.
SOS-NOW ON FACEBOOK!
June
Name: Ritumehraa
Email_Address:
ritumehraa@yahoo.com
From:
Found_Us_Via: Internet Search
Date: Wednesday, June 02, 2010
Time: 07:29 PM
Comments:
Hi, I am in process of diagnosis for my lacrimal (tear) gland swelling.
I don't have any other symptoms, nothing, no cough, no shortness of
breath, in eyes only tear glands are enlarged no dry eye nothing. Is
there anyone who shares my experience. However, I have slight ache in my
fingers and toes and tingling in finger tips, sometimes pain in my leg
from knee to ankle and in arm from elbow to wrist. Sometimes I have
sensations of pressure in my middle back it only lasts for a few
seconds, it's like when you get up after sitting for long with support.
I had a chest X-Ray today and have swollen lymph nodes but lungs are
clear. Combination of XRay and lacrimal gland swelling suggest
sarciodosis, I am scheduled for a chest CT scan after three weeks. I am
dead scared I am 34 yrs old Asian female and still in a state of denial.
I don't know at this stage, probably stage 1, should I go for steroid
therapy and should I wait it over. I am really really scared and
depressed I just don't know what to do how can I make it go away, I
recently gave birth to my first child and now I have to face this I
don't know. Is there any natural cure, any herb maybe wheatgrass
extract? I was thinking about following it instead of steroids? Help!
Thanks Regards Ritu
Name: SheilaD
Email_Address:
shesavka05@yahoo.com
From: Missouri
Found_Us_Via: Physician Referral
Date: Thursday, June 03, 2010
Time: 09:05 PM
Comments:
was just informed I had Sarcoid in May of 2010, am now taking 40mg
prednisone daily , just don't know what to expect and am really scared
of all the bodily changes that may happen, any one shed some light on
what to expect for the next 6 mos?
Name: Yasmin Hill
Email_Address:
yth8248@gamail.com
From: Atlanta
Found_Us_Via: Support Group Database
Date: Saturday, June 05, 2010
Time: 10:58 PM
Comments:
I was first diagnosed in 1999 @University of Michigan in Ann Arbor.
Unfortunately I moved to Atlanta in 2000 where I have found it difficult
to find satisfactory health care. For the past 2 years I suffered with
terrible headaches, loss of vision, joint pains, chronic sinusitis and
fatigue. At my insistence I was referred to a Sarcoid Center and saw Dr.
Marc Judson @Medical University of South Carolina. He is a godsend. My
disease is mostly extra-pulmonary (outside my lungs) including brain,
eyes, sinuses, liver, lymph nodes, joints, skin and maybe heart. Dr.
Judson understands this disease as a multi-organ protean masquerader.
The good news is that there are therapies other than prednisone. I
recently started on infusions of Remicade. I reviewed the studies with
Remicade and they look good. Physicians like Dr. Judson are continually
looking for therapies for sarcoidosis and he is hopeful of continued
advancements. So, my suggestions to those who posted in May are that for
this disease you have to take control, insist on seeing a real expert
preferably at a Center of Excellence. To paraphrase my first e-mail from
Dr. Judson " you have a bad disease but I think we can control it" So
don't give up....take control of your health care and beat this disease.
Name: Lena Richardson
Email_Address:
sweetsbylena@yahoo.com
From: Apopka, fl
Found_Us_Via: Internet Search
Date: Wednesday, June 30, 2010
Time: 04:00 PM
Comments:
Hello Everyone, I have not posted in a long time. I am back on Pednisone.
Whoohoo, Yall know that I really mean the opposite of that. Anyway, I am
so tired of this disease. Just an update for our new friends. I have
Sarcoid in my lungs, eyes, chest, and stomach. Oh and it has also given
me arthritis in most of the joints in my body. Just feel like crap most
of the time. Now it has gotten worse in my lungs. So that is why I am
back on Prednisone. I am not going to let it beat me. Oh by the way I
think that stress can cause a relaps. So try to stay stress free if you
can. Oh and watch what you eat. Try to eat as healthy as you can. Also
keeping your weight under control can help also. I have done all of
these things in the last 3 years and they really helped me. Came into
some very stressful times in the last 6 months. Now I am having a flare
up. I think that there is a link. God Bless Everybody, Lena
Name: Melissa
Email_Address:
mamart1171@hotmail.com
From: Santa Clara, New Mexico
Found_Us_Via: Internet Search
Date: Sunday, July 11, 2010
Time: 12:40 AM
Comments:
My brother was diagnosed with neurosarcoidosis in April 2008 and his
conditions has deteriorated significantly to the point where he is
completely dependent on care, including feeding. I am trying to find
more info, anything, he is 46 years old.
Name: Prem Varma
Email_Address:
ppvarma@gmail.com
From: Mumbai, India
Found_Us_Via: Internet Search
Date: Monday, July 12, 2010
Time: 07:39 AM
Comments:
I have been suffering from sarcoidosis since last 3 years. Diagonosis
took about one year after several tests of TB, cancer and other. It
affected my lungs, skin and eyes.( Joints are paining but yet to be
confirmed for sarcoidosis). At present I am continuing with medicine and
as per my chest x ray lungs are clear. There is no sign on skin . I have
been operated for cataract and vision is repaired. But now my almost all
joints are paining specialy right hand and left knee. Can any body
suggest what I should do. Since I am in Mumbai, India I need a doctor
who is well aware of sarcoidosis.
Name: Dell Hodges
Email_Address: Dhodges39475@aol.com
From: Purvis, MS in southern Mississippi
Found_Us_Via: Internet Search
Date: Wednesday, July 14, 2010
Time: 12:05 PM
Comments:
I was first told I might have sarcoidosis in the late 80's and was
confirmed by lung bio in 2006 in my lungs and lymphnoids I wanted to add
a note about something with the congestion in my lungs that seems to
have really helped with my breathing (I am on oxygen 24/7) it is called
Himalayan Salt rocks and is heated with a small bulb like a Christmas
light bulb it helps dry the congestion maybe it will help someone else,
and is all natural aide.
Name: Margaret
Email_Address:
dorismac2@yahoo.com
From: Reno, Nevada
Found_Us_Via: Internet Search
Date: Wednesday, July 21, 2010
Time: 01:22 PM
Comments:
I have sarcoidosis in my lungs -- after 5 years it seems to be in
remission-- am off prednisone-- now I have these rough grainy spots
showing up on my body, I was wondering what sarcoidosis on the skin
looks like -- I don't know a dermatologist here in Reno who knows about
sarc. -- any help will be appreciated. Margaret
Name: Lonnie Simms
Email_Address:
dad_fireman_son@sbcglobal.net
From: ILLINOIS
Found_Us_Via: Internet Search
Date: Friday, July 23, 2010
Time: 07:30 PM
Comments:
I am a white male, and turned 60 this year. I had red skin lesions from
my ankles to my knees. I had a lung biopsy 7 yrs. ago and was told I had
Sarcoidosis of the lungs and chest lymph nodes. I was also told not to
blame every ache or pain on Sarcoidosis. It seemed that mine goes in
stages. I would have a week of dizziness, then a week of blurred vision,
a week of nausea, a week of joint pain and a week of shortness of
breath. After the stages I felt OK for a few weeks then the stages would
start over again. Now they are lasting and I am just getting a few days
of feeling like I can function. My wife vibrates my back and legs but my
skin hurts and is very sensitive. On my days off work I have stayed in
bed for 3 days at a time forcing myself to go to work. I have worked
since I was 12 years old and can count on the first few fingers times I
have ever called off work. Now my body feels like I have a charlie horse
in my chest, in my legs and my legs are so weak. I have never been on
medication for my sarcoidosis and was told there is really nothing that
works. I am going to contact the doctor who did the biopsy, I need to
see if there is anything new that has developed. Since last summer I now
sweat profusely, summer and winter. I am exhausted and restless all the
time.
Name: Dynodump
Email_Address: dynobell@go.com
From: New York
Found_Us_Via: Linked Site
Date: Wednesday, July 28, 2010
Time: 03:20 PM
Comments:
I was diagnose over 24 years ago of having sacorid and it never was
active; recently I was told it is active and I still do not have any
symptoms thank GOD. I just want you to know don't worry everything will
be ok. I live a normal life with no meds. I thank God for that. Keep
thinking positive and keep your head up. If you are not having not
active symptoms live your life, but continue to get monitored and check
for any new news on this disease.
End of new messages
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