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August 2009
Name: CYNTHIA LUCAS
Email_Address:
click here to email me
From: wilson nc
Found_Us_Via: Internet Search
Date: Sunday, August 02, 2009
Time: 08:31 AM
Comments:
hi everyone, i have sarcoidosis since 2001. i didnt know i had the
disease until i was having chest pains and they did a chest x-ray. i am
not taking any medicine and never have. (Thank God) I did see a
pulmonary specialist and they did alot of test. I dont feel bad, just
get a little short winded every now and then and have mild chest pains
sometimes but still live a normal life. I do everything i want to do. I
go to work every day. I just thank God because i am still here (alive).
Just have faith and know that he is able to bring us through, I do.
(SMILE)
Name: adrienne
Email_Address:
click here to email me
From: new jersey
Found_Us_Via: Doctor Database
Date: Tuesday, August 04, 2009
Time: 10:22 AM
Comments:
I am seeking a physician who treats sarcoidosis not in the lung. I have
it in my joints and soft tissues. Please send any info as to where I can
find this info. thanks , adrienne
Name: Caprice
Email_Address:
click here to email me
From: Chattanooga
Found_Us_Via: Internet Search
Date: Wednesday, August 05, 2009
Time: 08:57 AM
Comments:
Hello, I am 42 yr old woman who was diagnosed with Sarcoidosis in 2000.
My secondary diagnoses include, Sjogren's Syndrome, Diabetes,Congestive
Heart Failure, Fibromyalgia, Sleep Apnea, Enlarged Spleen and Liver and
the list goes on. I have taken plaquenil for about 5 yrs now. My
sedimentation rate has always ranged from 40 to 70. It should be below
20. The company discontinued it, but it has Fish oil, Vitamin-D,
Sellenium, and Grape seed extract.
Name: Theresa Townsend
Email_Address:
click here to email me
From: Riverside, CA
Found_Us_Via: Internet Search
Date: Saturday, August 08, 2009
Time: 03:44 PM
Comments:
Dear All, I have had sarcoidosis since the early 1990's. It started on
my skin and still is there, then went to the lungs, then went to the
liver and spleen. This happened over a peroid of years. Some of the
things were treated and little damage done others were untreated and
more than a little damage was done. At this time in the "Sarcoidosis
Game" I am in the Arthritis section of the game. I have what the doctor
calls polyarthritis, which is several types of arthritis all hitting me
at one time in various parts of my body. Fun, fun, fun!!! Because the
sarc. in the liver went untreated it is now cirrhosis, which means no
NSAIDS and no Tylenol and no relief. I was on a low dose of prednisone,
but it wasn't helping so I was wend off of it. I have tried a lot of
other meds and they havn't help either. I am still taking plaquenil, it
helped for awhile. What I have found is although the meds I was taking
weren't helping to stop and or reverse the problem it was helping to
prevent the spreading of the arthritis to more joints. Much Thanks. The
Cronic Sarcoidosis Gamer. Theresa Townsend
Name: Tim Homers
Email_Address:
click here to email me
From: Hartford Wi
Found_Us_Via: Internet Search
Date: Sunday, August 09, 2009
Time: 11:55 PM
Comments:
Hello, I got real sick after a minor surgery in 1996. I got a fever of
104, massive night sweats, muscle pain, tremendous pain inside my bones,
pain if any of my skin was touched, solid red eyes, sudden weight loss,
lung pain and extreme fatigue. 3 days before xmas, I had a lymph node
biopsy taken from under my collar bone. Before the results came in the
doctor told me I had stage 4 lymphoma and the lymph node he removed was
the worst he's seen. He said he would schedule cancer treatments for the
next morning. My life literally flashed before my eyes just like in a
fable. Almost instantly I remembered my entire life, places I'd been,
stuff I'd done as a kid and as an adult. Nearly everything I'd ever
experienced flashed before me in seconds.This is uncomfortable to say
but I've seen the grim reaper beside me and it no longer scares me. It
was quite an experience and it changed me. Well an hour later the
results came back from the lab and the doctor came up to me and said
"congratulations, it's not cancer it's just incurable sarcoidosis".
Nice. Like it is written in many places, mine was sudden onset and my
symptoms are far less now. I still have an enlarged liver, sometimes
tough joint pain, enlarged lymph nodes, my nasal cavity is swollen, lung
pain, heartburn, permanent hearing reduction in one ear, breathing
difficulties and a cough which drives my co-workers crazy. I usually do
ok but often when I walk I have to stop and breathe. Many times I need
to stop and breathe when I walk from my car to into the office. I take
supreme power naps where I collapse like a tree onto my bed, fall asleep
in seconds and sleep like a steam train flying down the rails. My wife
is extra-wonderful and supports my desire to sleep. Things are better
but I still have sleep apnea (I use a cpap), psoriasis, real high blood
pressure, bad nails in feet, sometime bad hip and joint pain, cough,
lung pain and constant fatigue. I only take high blood pressure
meds.This sounds crazy but when I push myself by working tons of
overtime and always keeping myself driven, I feel better. When I spend a
week or two at my cottage in northern Wisconsin and I let myself relax,
my symptoms always seem to get worse. I got sick when I was 36. Now I'm
49 and the experience still has me focused on enjoying life and family.
Thanks. Tim
Name: Teresa Juarez
Email_Address:
click here to email me
From:
Found_Us_Via: Internet Search
Date: Tuesday, August 11, 2009
Time: 12:35 AM
Comments:
I would like to know with this disease if a person can return to their
normal self after prednisone treatment for shortness of breath and
cough? I will stop the prednisone in two weeks and am worried that the
shortness of breath may come back. The prednisone helps with the
breathing and some of the knee and leg pains. I can live with the knee
and leg pains, but the shortness of breath and coughing is horrible as
it limits me to talking one or two steps without losing my breath.
Although my doctors are knowledgeable about sarcoidosis, they tell me
that each person's body is different with this. I would like to know
what others experiences have been. I do not plan to let this disease get
the best of me.
Name: Sanjay D
Email_Address:
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From: India
Found_Us_Via: Internet Search
Date: Tuesday, August 11, 2009
Time: 07:35 AM
Comments:
My symptoms started in January, 2008 with acute pain in legs and fever.
After initial 4 months, finally Doctors decided / diagnosed me
Sarcoidosis. They were actually surprised as I am working in financial
organization and not prone to outside infection. Now I am on steroids
for more than 15 months. I have started with a dose of 40 mg and now I
am on 7.5 mg. But my problem is that I can't miss my tablets even for a
single day. And moreover, I have developed almost all side effects of
Steroids - like Insomnia, skin infection, eye-sight, weight gain,
weakness / pain in each and every bone. Very honestly, I really don't
know whether these are side-effects or its something to do with my
disease. I am really confused. Its sometimes very frustrating that after
taking medicines for the last 15 months, I still have to bear that pain
in my legs. There is no single day during these last 15 months, when I
felt ease in my pains. In addition to Steroids, I have to take one
tablet of pain killer (Ibobrufin or Paracetamol) and one tablet of
Zolfresh / Alprex (sleeping pill). I keep my work schedule so hectic to
avoid thinking too much on the disease. I have also read other messages
and was shocked to know the problems everyone is facing for so many
years. Wish everyone all the very best. Just pray to God about
everyone's healthy recovery!
Name: Brigitte
Email_Address:
click here to email me
From: Tampa FL
Found_Us_Via: A Friend
Date: Thursday, August 13, 2009
Time: 09:57 AM
Comments:
Hi , I have fibromylagia and just 2 days ago I was diagnosed with
Sarcoidosis. I've read about it and I have a lot of the symptoms but
they are also very close to the fibro symptoms. The muscle and bone pain
is the worst and the night sweats for me are all day. The fatigue is
just unbearable, I feel like life is just wasting away, I'm 51 years old
and my question is does this ever stop, also my doctor told me treatment
is Chemo, but I've not read anywhere or seen anyone talk about that ,
please help me . Where do I start, and what do I have to look forward
to? Any help would be greatly appreciated. Thank you , worried of the
unknown
Name: Brenda Hendrickson
Email_Address:
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From: Michigan
Found_Us_Via: Internet Search
Date: Thursday, August 20, 2009
Time: 12:15 PM
Comments:
Diagnosed 1993-Lung and bilateral optic nerve involvement, Six mos. of
steroids resulted avascular necrosis 2004, bilateral hip replacement,
Diagnosed 2009-Bone and soft tissue involvement right foot, Plaquenil
has been recommended. Any thoughts or experiences? I keep thinking more
is wrong with me, heart palpitations, fuzzy thoughts. Docs blow it off.
Why are there not docs that specialize with this disease? Help !!
*Admin. Message- Try the
Dr. Database:
The worldwide directory of Sarcoidosis Physicians.
It may help.
Name: Betty Dysart
Email_Address:
click here to email me
From: Selma, Alabama
Found_Us_Via: Internet Search
Date: Thursday, August 20, 2009
Time: 02:31 PM
Comments:
In early 2004 I left a job because of overall not feeling well, I went
to countless of doctors with numerous complaints everything from feeling
of a crawling sensation all over me to boating and bawl problems, the
doctors said I just want to be sick and sent me home with something for
anxiety and insomnia. Soon I had developed difficulty breathing and
developed a cough with thick yellow mucus and a rash, night seats and
fever I finally went in to the emergency room and had a chest x-ray
which revealed a mass in my lungs. At first it was diagnosed as
brunchitis then Pnuemonia, soon I was admitted in hospital to under go
extensive testing. My doctors thought it to be tuburchulosis, all tests
turned out negative, at the same time I was experiencing pain in my
eyes, an eye doctor diagnosed me with sarcoidosis of the eyes and
demanded that that I be tested for the same in my lungs. Originally I
was diagnosed in April of 2007 I had a biopsy done just above my collar
bone, my doctors never sat down to talk to me about it. All I know is
what I have read on the internet and in books. Since I was diagnosed my
health and my life has gone down the tubes, My husband left me ( it
seems he was satisfied with the insomnia thing ) two months after my
diagnosis my mother pass away. Since her passing everyone in my family
has turned their backs on me (so I guess every one in my family is
expecting me to pass too). I read somewhere that keimo therapy is used
to treat sarcoid, I wonder where can I go to recieve this treatment.
Everyone wants me to listen to them complain about their health and be
sympathetic to them, then they want me to take here take them there do
this or do that for them. With all the daily aches and pains I'm having
my children are all grown now and all I want to do is get away from
everybody ( mainly my sisters )and get in my own corner of the nation,
recieve care for my illness and wait on death.
Name: Iolanda Barr
Email_Address:
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From: Northamptonshire, England.
Found_Us_Via: Internet Search
Date: Sunday, August 23, 2009
Time: 04:33 PM
Comments:
Hi all, have had sarcoid since 1983, am now 55 years old and still often
struggling with minor symptoms. Have good and bad days, mostly joint and
muscle pain. Sensitive to light and sun. Would like to ask fellow
sufferers about constant balls of mucous. Do any of you have this? Also
waking up in the middle of the night coughing up these balls and feeling
someone has their hands tight around my throat. Have found the doctors
here a waste of space and not interested in support of long term
problems. Guess i would get treatment etc., if an emergency as i have in
the past but its in between when it would be good to have an
understanding ear. Not ever met anyone with sarcoidosis, would love to
be in contact with someone close to here to discuss similar experiences
and ongoing management of this condition . Hope you all Stay well and
symptom free.
Name: Rebecca Goutermont
Email_Address:
click here to email me
From: Silver Bay, MN
Found_Us_Via: Internet Search
Date: Monday, August 24, 2009
Time: 09:21 PM
Comments:
My husband was diagnosed with sarcoidosis about 7 years ago. It is
sickeningly helpful to read your comments and to know we are not alone
in the fatigue, aching, shortness of breath and granuloma camp. Thank
you for sharing. We have a question. Has anyone had, or is it possible
to develop a granuloma in the prostate? My husband had an elevated PSA,
which resulted in biopsies that were negative. The ultrasound did show a
possible small cyst? We just had a recheck which showed the PSA has
doubled. He also occasionally has "stabbing" pain in his privates.
Anyone else? Again, I thank you for sharing. Becky
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September 2009
Name: Susie Sarciod
Email_Address:
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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:
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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:
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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:
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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:
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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:
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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.
SOS-NOW ON FACEBOOK!
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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.
SOS-NOW ON FACEBOOK!
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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 :)
SOS-NOW ON FACEBOOK!
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?
End of new messages
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