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January 2011 Happy New
Year!
Name: louis st-georges
Email_Address:
ti_loup1963@hotmail.com
From: sturgeon falls ontario canada
Found_Us_Via: Doctor Database
Date: Monday, January 03, 2011
Time: 08:09 PM
Comments:
hi i am up here in the cold weather and was diagnosed withh pulmonary
sarcod 5 years ago and now it has reaches my stomach hear kidneys eyes
and and in he last 2 mths full flares of arthritis in my lower ankles
and and left side of my body .and fatigue has set back in as i am on 35
mg of prednisone and have learned to put up with the insomnia and lack
of intimacy with my spouse...not...i have found it very difficult to
find any docs that know what they are doing up heare when it cmes to
sarcoidosis.and have found 1 in quebec that is 8 hrs from me ..if any
canadians or any 1 has any suggestions as i am 4 hrs norh of toronto
canada .i wuld appreciate it or any support s it is hard to find support
up here as this is farely new here as far as i can see..by the way happy
new year ,,everyone ..thks louis
Name: Karen A.
Email_Address:
tambrose@bellsouth.net
From: Greenville South Carolina
Found_Us_Via: Internet Search
Date: Thursday, January 13, 2011
Time: 05:48 PM
Comments:
Hi Everyone! I am 53 years old and was diagnosed with sarcoid when I was
27 years old. It was diagnosed through a bronchoscopy following
shortness of breath and dry, hack coughing. I took prednizone for two
years and when weaned of it, did great and felt great! Last year, I was
diagnosed with Grave's Disease. I chose to treat the symptoms instead of
having my thyroid removed. Lately, I have had serious lower back pain,
intestinal irregularities (excessive gas, extra bowel movements, or days
without a bowel movement). I also feel a pressure in my left rib cage.
No skin lesions or rashes. What are the symptoms when sarcoid affects
your spleen and intestines? Does anyone have sarcoid in the thyroid that
was diagnosed as Graves instead?
Name: Marsha Adrienne
Email_Address:
mardavnya@verizon.net
From: Brooklyn, New York
Found_Us_Via: Support Group Database
Date: Wednesday, January 19, 2011
Time: 05:48 AM
Comments:
My brother was diagnosed with sarcoidosis over 20 years ago. His disease
is now in the advanced stages. I need help finding proper medical care
for him and a long-term nursing home or other care provider. My brother
is 61 years old, lives alone, and is unable to care for himself. PLEASE
HELP ME!
Name: Karen L. Wilson-Maye
Email_Address:
specialk2011tai@yahoo.com
From: Baltimore, Maryland
Found_Us_Via: Online Support Group
Date: Wednesday, January 19, 2011
Time: 11:00 AM
Comments:
I was diagnosed with sarcoidosis about 12 years ago after doctors
discovered also that I was suffering with Arnaud Chiari malformation of
the brain. I have had several decompressions and now have caught a head
cold. Head colds and hydrocephalus do not go together, as I am now very
dizzy and unable to stand straight. Has anyone else had this symptoms
whenever they have a cold?
Name: Marsha Wilkins
Email_Address:
mwilkins@windstream.net
From: Ohio
Found_Us_Via: Internet Search
Date: Friday, January 21, 2011
Time: 10:22 AM
Comments:
Hi All, In 2003 I was told I had lung cancer and given 3-6 months to
live. A biopsy, thankfully, diagnosed it was Sarcoidosis. After years of
struggling my doctor tells me I am one of the 10% or so that has
'chronic' sarcoidosis, causing extreme fatigue for which there is no
cure. I can sleep 12-14 hrs a day and spend the rest of the day on the
couch. I have to force myself to do things that mentally I WANT to do,
but my body says no. Exercising, even moderately, causes a set back.
This is very depressing as erxercising has always been a very important
part of my life - mentally and physically. After years of struggling a
doctor prescribed Focalin XR (not the generic brand), which is primarily
used for ADHD, but for some patients with Sarcoid it is very effective.
I was one of the lucky ones and felt I had finally gotten my life back!
Unfortunately after 2 years my insurance has taken this medication off
its formulary list and will no longer pay even a portion of the cost
using the explanation this drug is for ADHD and not Sarcoid. Next we
tried Concerta 54mg. It isn't nearly as effective and again is not
covered under my insurance plan. Please, does anyone have a suggestion
for something that might help? My thoughts and prayers to all Sarcoid
sufferers!
Name: Rubi Ivery
Email_Address:
rlivery14@gmail.com
From: Miami, Florida
Found_Us_Via: Internet Search
Date: Tuesday, January 25, 2011
Time: 08:05 AM
Comments:
Hello there are there any support groups in Miami,Florida.
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February 2011
Name: Jacob Christensen
Email_Address:
jacobalma@gmail.com
From: Utah
Found_Us_Via: Internet Search
Date: Saturday, February 05, 2011
Time: 09:29 PM
Comments:
My name is Jacob Christensen, 29 years old. I was diagnosed with sarcoid
about a year and a half ago. the last three months it progressed
severely, taking me from running around 7 miles a day, to barely being
able to climb a stair case without having to sit down and catch my
breath. I have been on 50mg prednisone for 2 months now and am not
really having too many side effects, I go to bed around 9 with melatonin
and am up by 5. I have noticed a HUGE increase in my appetite and have
gained about 15 lbs so far. I am starting the p90x program next week to
help keep myself in shape underneath the weight gain that I have heard
is inevitable with the steroids. I miss running, but between the
progression of the disease and the cold weather, I have been stuck
inside and I HATE running on a treadmill. though I do every few days til
I start coughing too hard to continue. I really hope the steroids make
this stuff go away without causing other problems. I had a rough year
after I got diagnosed and relapsed to alcoholism. Though soon after I
started the meds I figured I better just accept the things as they are
and sobered up. 41 days clean today. I am also in full time college on
my way to a psyche degree. I wish everyone luck with their specific
situations. This is a crazy disease in that we know very little. and
watching House doesnt help the unknown of it's possibilities!
Name: Carol Crouch
Email_Address:
capezner@gmail.com
From: Denver,Co
Found_Us_Via: Internet Search
Date: Monday, February 07, 2011
Time: 10:17 PM
Comments:
I,too,have sarcoidosis. Was diagnosed in 2007. It is scary at first,but
have found that reading everything I can find on the subject on the
internet in research done,possible causes,helps take out some of the
mystery and fear of the unknown. Have tried Methotrexate and Prednisone
tabs. What helps me more when feeling shortness of breath upon walking
outside is Flovent inhaler(a form of Prednisone). My husband and I are
in Denver,Co. Breathing in the cold,dry air in winter have found is
causing shortness of breath.Am in stage 3 now,but have been told by my
doctor that it doesn't have to progress to stage 4. It can remain in
stage 3. That is comforting,believe me. It's tiring in energy levels,I
know. Have learned to stop frequently when walking our dog and take a
few breaths whenever needed and pace energy when doing housework or
errands.And drinking more water,juices, eating p rotein and fruit during
day helps.Just do what you can.Try not to push it too far. Hope this can
be of some help.Know it can be hard,frustrating,scary, kind of
depressing at times too. One day at a time(can be easily said,but yet
true)
Name: ANNA walth
Email_Address:
awalth1@yahoo.com
From: fargo nd
Found_Us_Via: Online Support Group
Date: Thursday, February 10, 2011
Time: 08:53 PM
Comments:
IVE GOT SARCOID FOR MANY YEARS, WOULD LIKE TO HEAR FROM SOMEBODY ELSE
THAT HAS IT
Name: nicey1966
Email_Address:
nicey1966@aol.com
From: new jersey
Found_Us_Via: Internet Search
Date: Sunday, February 13, 2011
Time: 01:22 PM
Comments:
hello i to was diagnoise with sarcoidose went for a xray havieng carpal
tunnel surgery that's when i found that i had it i feel find the only
problam i'm haveing is that i have spots that's comeing out on my face
im useing cream my dermatologist prescribe but it seems like its not
helping im depress i been useing a lot of creams nothing seems to work
if theres any one with any solution please respond back
Name: Wendy M
Email_Address:
windybay5@comcast.net
From: Massachusetts
Found_Us_Via: Internet Search
Date: Wednesday, February 16, 2011
Time: 06:16 PM
Comments:
I was just diagnosed with sarc by a biopsy. seems causes of sarc can be
environmental. I am wondering if applying bare minerals powdered make-up
every day and breathing it in for some years now could of caused this.
Any thoughts on this?
Name: Andy Thomson
Email_Address:
andy@thomsondesign.co.uk
From: Chelmsford, Essex, UK
Found_Us_Via: Linked Site
Date: Wednesday, February 23, 2011
Time: 07:38 AM
Comments:
This is the first time I have done an serious research on my condition
and so I thought I would share my story as I have been living with
sarcoid for 30 years. I was diagnosed via skin biopsy in 1981 (aged 27)
with sarcoidosis of the lungs/lymph nodes. I remember suffering from
joint pains as a teenager, but the cause was never identified as it
would come and go. When I was finally diagnosed, I had been suffering
from a dry cough for several weeks and went to my doctor because I
couldn't get rid of it. Something about my symptoms tipped him off, as
he sent me for the test. Luckily for me I have not had it very badly.
However, for the first few months I was very tired. I just about managed
to go to work, but by the end of the day I was wiped out and simply went
to bed once I got home. The tiredness slowly improved over the next
couple of years and the frequency of the chest xrays and the battery of
other regular tests was reduced over about 10 years until I was finally
told I was in remission in 1991. Since then I have had times when the
cough comes back for short periods, but not serious enough to need any
treatment other than listen to my body and take things easy for a while.
I currently have the cough again, but my reason for researching now is
that I also have psoriasis like patches on my legs and feet and the itch
is driving me mad! I have tried all the usual moisturisers and topical
steroids, but they don't work and in fact the steroid made things worse.
Aloe Vera gel gives some relief from the itch, but doesn't seem to be
doing anything else, so I am still hunting for something effective. I
count myself pretty lucky, really. Although I have times when the
sarcoid impacts on my life, it has never seriously stopped me from doing
all the normal things and I carry on pretty much as normal.
Name: deborah
Email_Address: cfn@dodo.com.au
From: australia
Found_Us_Via: Internet Search
Date: Thursday, February 24, 2011
Time: 11:46 PM
Comments:
i have had a visit to doctors for swollen ankles joint pain, can't walk
very far at all. they did blood tests white cells o.k. they did xray
chest got a smudge did a ct scan says sarcoidaosis or lymphoma outside
of lungs, and nodes in both lungs, just had lung biopsy yesterday for
verification of what it is?? will let you know
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March 2011
Name: orviaal mosley
Email_Address:
From: kansas city, missouri
Found_Us_Via: Internet Search
Date: Thursday, March 24, 2011
Time: 06:44 AM
Comments:
just found out a few mths ago i have sarcoidsis, i am 36 with 2 children
and 2 grand children, i need help on how to handle this and to talk to
people for support. and what help is there in the community that can
help me i need help
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April 2011
Name: Dr. Catherine Roberts
Email_Address:
c_roberts31@msn.com
From: Atlanta, GA
Found_Us_Via: A Friend
Date: Thursday, April 14, 2011
Time: 05:58 PM
Comments:
Sarcoidosis Awareness Month Please join us Sunday, April 17th at 3:00pm.
at Moe's Southwestern Grill on Mt. Zion Rd, Morrow GA to bring about
awareness to this disease. We will also eat some wonderful burritos.:)
Name: Betty C.
Email_Address:
Bilbet721@aol.com
From: South Carolina
Found_Us_Via: Internet Search
Date: Friday, April 15, 2011
Time: 12:01 PM
Comments:
Have had sardoid for 5 yrs. and it was only confined to my lungs but it
is still active and now have marks on my face, which I really hate.
Doctor suggested dermatologist and the medication plaquenil. Anyone have
any experience with this med and clearing the face and scalp. Thanks.
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May 2011
Name: Trijendra Vikram Srinet
Email_Address:
trijendravikram@gmail.com
From: Mumbai
Found_Us_Via: Internet Search
Date: Monday, May 02, 2011
Time: 12:24 PM
Comments:
During a pnemonia attack my Uncle is dignosised of sarcoidosis which is
supported by symtoms like joint pain of 7 months, skin rashes and
finally breathing problem. Now also he is fighting of disease but his
symtoms suddenly disappeared and now left with breathing problem. with
this platform I request to suggest me Doctors available in India who can
treat him and make him dependent. Waiting for an early reply.
Name: Steven Couch
Email_Address:
scouch@apexelectricandsign.com
From: Greenfield, IN
Found_Us_Via: Internet Search
Date: Monday, May 02, 2011
Time: 02:56 PM
Comments:
Hi. I was diagnosed with Sarcoidosis March, 2011... It is currently
located in my chest lymph nodes only. I took a 30 day prescription of
Prednisone resulting in some nodes getting larger. I have had several
x-rays, cat scans, pet scans, blood tests, etc. It seems as every doctor
has a different opinion of the treatment (or lack of treatment)
recomended. I have visited so many sites looking for a simple answer to
this, (obviously) with no luck! I guess I just wanted to post and be a
part of this site. God Bless you all!
Name: Linda T.
Email_Address:
mammalinda6060@comcast.net
From: Maryland
Found_Us_Via: Internet Search
Date: Monday, May 02, 2011
Time: 08:04 PM
Comments:
I have had Sarcardosis for about 6 years. I was in remission for a short
while, however even in remission some of the symptoms still exist. The
last few years I have had balance problems and tingling and burning in
my feet, toes, legs and tips of my fingers. The body pain is not as bad
as it use to be, but the tingling and burning drives me nuts. I was on
Gabapentin but was recently the doctor switch me to Lyrica which is
expensive. I was taking Hydroxchloroquine but have been off of that for
a few months. I use a cane for the balance problem. Don't use it much at
home, but I do when I'm out. If I sit down it's hard to get up; when I'm
walking I stumble like a drunk. My legs are weak and I can't stand for
to long. When I go shopping I always have a basket it holds me up. I'm
on Advair and Abuteral for shortness of breath. Some days I seem to have
a lot of energy and the next few days I can hardly function I'm so
tired. I recently had a bunch of blood test for the neuorpathy. I go
back to the neuro doctor this week to get the results and more test.
Thank God for this site because family and friends really don't
understand this disease and what you go through. I don't want to
complaint but venting sure helps. Keep the Faith, Trust in the Lord.
Name: Chad B from VA
Email_Address: vtcrb@yahoo.com
From: Virginia
Found_Us_Via: Internet Search
Date: Tuesday, May 03, 2011
Time: 03:19 PM
Comments:
I have had Sarcoid for over 10 years now. Started in My Lungs then moved
to my Liver. My lungs have been ok, but recently i have developed cough
and some shortness of breathe. Also have sweats and severe fatigue come
back. I know some say when it comes back in an Organ already effected it
is even worse than 1st time. I just wanted to hear if anyone has had
this happen to them.
Name: Stephanie Posey
Email_Address:
stephposey04@yahoo.com
From: Macon, GA
Found_Us_Via: Internet Search
Date: Tuesday, May 03, 2011
Time: 03:47 PM
Comments:
I'm actually searching for help for my mother-in-law, diagnosed in early
2010. She is extremely ill with Sarcoidosis, no one in this area seems
to know how to treat her. No one will get on board and communicate due
to constant "Insurance Issues". Even Mayo Clinic has rejected her,
saying they don't take her insurance. I'm terrified I'm going to lose
someone I love dearly to this disease. She is extremely swollen from the
prednisone, other than that, I cannot tell any difference since she
began taking the drug approx 6 wks ago...if anything she is worse! She
has been told that all of her major organs, especially lungs, are
covered in granulomas. She has sores all over her legs and chest area
that are from the sarcoid. Any advice a fellow sufferer or family member
could give me would be most appreciated! Thanks!
Name: ChadBVA
Email_Address: vtcrb@yahoo.com
From: Virginia
Found_Us_Via: Internet Search
Date: Thursday, May 05, 2011
Time: 02:06 PM
Comments:
I have had Sarcoid for over 10 years. I was diagnosed when I was 22
through a lung biopsy. It was originally thought that I had Cancer. I
was told it would go away in 6 months. Never was I told that in some
patients it never goes away and can move to other organs. I saw a lung
specialist for about 5 years and then stopped going. I have never taken
ANY of the steroids they want to give us, because of the side effects
they cause. In 2005 i began to experience sharp stabbing pains in my
upper right side. Had blood work done and was then scheduled for Liver
biopsy. Confirmed that it had moved to my Liver as well. I have been
hospitalized 2 times since then, had 2 more Liver biopsies. I still
experience the pain in my side and the fatigue. The reason for this post
is because I think it may be coming back in my lungs again. I have had a
nagging cough for over a month, bad sweats, severe fatigue and just feel
like poop. Just wondering if anyone has every had it come back in organ
and if so is it milder or more severe than the 1st time. When I first
had lung involvement I lost 35lbs and thought I was not gonna make it. I
appreciate any feedback
Name: Dana Eigner
Email_Address:
dana.eigner@hilton.com
From: California
Found_Us_Via: Internet Search
Date: Wednesday, May 11, 2011
Time: 06:23 AM
Comments:
Is there a connection between Sarcoidosis and Peripheral Vascular
Disease? Anyone experiencing this problem?
Name: Linda Graffius
Email_Address:
swedemom@verizon.net
From: Erie, PA
Found_Us_Via: Internet Search
Date: Wednesday, May 11, 2011
Time: 02:37 PM
Comments:
My good friend has sarcoidosis. Her skin, lungs and kidneys are
affected. Can anyone recommend a specialist in the Pittsburgh area? She
is in a crisis right now and needs help A.S.A.P Thank you very much.
Name: robert torrez
Email_Address:
lionsfan128@yahoo.com
From: melbourne, florida
Found_Us_Via: Internet Search
Date: Saturday, May 14, 2011
Time: 01:00 AM
Comments:
Hi I was diagnosed with sacoidosis of the heart in dec 2009 and ended up
with a heart transplant in feb 2010. I'm looking for a group close to my
area or needing more info about sarcoidosis. Thank You
Name: lawanda
Email_Address: lrt8063@aol.com
From: virginia
Found_Us_Via: Internet Search
Date: Saturday, May 14, 2011
Time: 04:49 PM
Comments:
hi, Im a 33yo was dx with sarcoid Feb 2010. What a life changing event.
I have sarcoid in my eyes, lung,and skin. I never heard of this
condition until I was dx. How scary was it for the doc to tell me there
is no cause or cure for sarcoid. Been having everything from depression,
pain, confusion, blurred vision and many more issues. I have been on the
lovely prednisone for lil over a yr started @ 40mg now presently on 5mg.
Doc change to plaquniel but it gave me severe chest pains. Then wanted
me to take methotrexate 2.5 but after reading side effects refused. My
eyes and joint hurts all the time. I feel as thought no one around me
understands whats going on. Like its all in my head. I wish it was that
easy. I talk to God everyday, I dont ask question why i have sarcoid. I
just hope and pray one day he will bless someone with the gift of a cure
for us.
Name: johnnybg
Email_Address:
rjgoode@bigpond.com
From: Australia
Found_Us_Via: Internet Search
Date: Friday, May 27, 2011
Time: 09:46 AM
Comments:
Neurosarcoidosis diagnosed Jan 2011 after 4 months of testing. 41 yo
male
Name: Mike O'Neill
Email_Address:
clanoneill@comcast.net
From: Troy, MI
Found_Us_Via: Internet Search
Date: Monday, May 30, 2011
Time: 11:02 AM
Comments:
I am bedridden with something diagnosed as neurosarcoidosis. I am
seeking information and sources of support.
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June 2011
Name: Paula Stewart
Email_Address:
stewartpaula2011@gmail.com
From: Montreal
Found_Us_Via: Online Support Group
Date: Monday, June 13, 2011
Time: 08:40 PM
Comments:
Hi, I just received a Sarcoidosis diagnosis two weeks ago. I was very
relieved because i knew there was something wrong with me for at least
four years and I could not pin point it. I had difficulties with my
right eye; it was inflamed and the Dr I visited in a local clinic
dismissed it as pink eye and gave me meds for a week - the eye remained
pink (just the right eye) and I knew there was something wrong. Then one
early morning around 3 am I felt my eye tearing up and I went to the
bathroom and turned on the light and I was in severe pain - The light
sensitivity was unbearable. I panicked but I did not call anyone I just
felt it would go away - the next day the eye was better but I was
freaked out. A week later a friend of mine suggested that i go to see an
Opthamologist - which I did and he diagnosised my eye condition as being
iritis (bilateral uveitis) and Wikipaedia helped me to find the link to
Sarcoidosis after my Mom gave me an old article discussing iritis and I
went online(iritis is a symptom of our disease) I have been taking
ratio- prednisone drops for two weeks every hour and now every two hours
6 times a day. My eyes feel better but I have been feeling very alone. I
am scared about my future and reading the posts on this site have not
been consoling...I am keeping positive and I need to know if anyone has
any ideas about foods that can help me to keep my feelings and symptoms
under control. I have had night sweats, chills, dizziness, rapid weight
loss, nausea and pain in my joints. I feel fine today but two days ago
the lymph nodes in my throat were so inflamed I thought that my throat
was closing up. I do not want to take steroids and I downloaded a manual
by a lady named Danielle May - she is not an authority but she speaks
about her personal experiences with the disease. I am going to try
acupuncture since my closest friend has an auto-immune disease and she
has been helped by this age-old practice. Thanks for listening we have
to be here for each other -- I am scared but I remain positive and I
will focus on what i do have and not on what I don't:)
Name: Ruth Day
Email_Address:
dayir140@hotmail.com
From: Fort McMurray AB Canada
Found_Us_Via: Internet Search
Date: Tuesday, June 14, 2011
Time: 03:45 PM
Comments:
I was diagnosed in Yellowknife NT in 2007 with Sarcoidosis in my lung, I
had problems with my joints and being tired and shortness of breath,
while reading everyones messages I just had to let you know what I am
doing to help myself and I hope this will help others. I was on
prednisone for a short time and I stop taking them I found that it was
not helping me so I started exercising all the time and eating properly
and decided to buy some vitamins to help with my joints and being tired.
I still do get tired at times but not as bad, I started taking Vitamin
D, Monucare for Women and Omega 3 fish oil capsules for my joints and
low daily dose asprin. I also have a Symbicort puffer that I take when I
feel that I am having problems breathing,I found with those vitamins I
can really manage my Sarcoid. Everytime I go to visit the Doctor they
cannot get over how good I look and they keep telling me to keep on
doing what I am doing. I cannot say that these vitamins will work for
everyone, but right now it is working great for me. I can run a little,
more than what I could do before and my main exercise is walking and
using the eliptical. I am still looking for other vitamins that will
take away my shortness of breath, maybe I won't find it but meanwhile I
will continue to do what I am doing until it do not work for me anymore.
I sure hope this will be a help to someone that have Sarcoidosis.
Name: Jay W Callihan
Email_Address:
jaydubss@yahoo.com
From: OH
Found_Us_Via: Online Chat Group
Date: Tuesday, June 14, 2011
Time: 07:52 PM
Comments:
I was diagosed with pulmonary sarcoidosis in 1993 am an Army Hospital I
had served in Desert Storm in Southwest Asia. I have been told that I
have no symptoms but I have always had this cough at certain times that
is gradually getting worse. My PFTs seem normal but the cough is
there and is sometimes so deep and persistent I throw out my lower back.
Any comments?
Name: Craig Wolf
Email_Address: I
craigwolf@bellsouth.net
From: Leesburg Florida
Found_Us_Via: Internet Search
Date: Friday, June 24, 2011
Time: 09:08 PM
Comments:
I was misdiagnosed with Cystic Fibroisis and I was treated for it for 2
years. After an Open Lung Biopsy, I was diagnosed with Sarcoidoisis. I
was given 60mg of prednisone for 14 years. I had two seperate Gallium
Scans where I was told the Prednisone was not working. I saw the head
pulmonologist at Mt. Saini Hospital who discovered Sarcoidoisis.I had
Cushings Syndrome because of the high doses of prednisone. I was put on
Imuran and the sarcoidoisis went into remission. I now have Asthma, COPD
and emphasema which is controlable with meds. My biggest fear is the
sarcoidoisis will come back and I will be back on oxygen and have to
lead a limited lifestyle again.
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July 2011
Name: Strueax
Email_Address:
strueax@gmail.com
From: Oxnard
Found_Us_Via: Internet Search
Date: Sunday, July 03, 2011
Time: 11:35 AM
Comments:
I was diagnosed with sarcoid in 1998. I am still on medications to
control the illness. I still have to use inhalers and pain meds for
joints. I am lucky to be able to work but come home exhausted and no
energy on the weekends. Anyone else have the same problem?
Name: Camille
Email_Address:
camillegerrald@yahoo.com
From: Buffalo,NY
Found_Us_Via: Support Group Database
Date: Saturday, July 09, 2011
Time: 09:22 PM
Comments:
Hello my name is Camille 42 yrs old after being told I had Lypmphoma,I
find out on Feb 14,2011 that I have Sarcoidosis,it's in the chest
Lymphnodes,2 leasions on the liver,maybe kidney too;and I am Sleepy all
the time I'm alway wanting to do something but never having the energy
to do it. I have Joint pain all the time mainly on my right sidefrom my
neck to my foot,that pain has been on and off for the past 20 yrs,i
alway though it happened at work,but I'm learning now it most likly was
Sarcoid the whole time.Like most Sarcoid Ppl I don't look sick and truth
be told i don't feel sick,but sometimes the pain get's to me,I'm not on
any med's as of yet,beside a Motrin and Loratab here n there.1 thing I
have noticed is I'm big time depressed b/c I want to do so much but I'm
always tierd.Any ways I'm around feel free to e-mail I would love to
chat with Ppl like me
Name: Kenneth Dawan
Email_Address:
dawancommdevelopment@comcast.net
From: Houston Texas
Found_Us_Via: Linked Site
Date: Tuesday, July 19, 2011
Time: 12:06 AM
Comments:
Question; How many stages of scars are their ?
Name: Martha Neeley
Email_Address:
Maspikes49@yahoo.com
From: Texas
Found_Us_Via: Local Support Group
Date: Thursday, July 28, 2011
Time: 07:10 AM
Comments:
I am looking for a NEUROSARCOIDOSIS docter in Texas
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SOS-NOW ON FACEBOOK!
August 2011
Name: rachelleen mars
Email_Address:
mars.rachel@ymail.com
From: cape town south africa
Found_Us_Via: (please select from list)
Date: Wednesday, August 03, 2011
Time: 10:02 AM
Comments:
hi. my name is rachelleen mars. im from cape town , south africa. i was
diagnose about six years ago with sarcoids. i had it in my nose,on my
right eye lid,lungs and now in my wrist and fingers. ive been on
prednisone for the whole time until last november when my docters stop
treatment. now my wrist and fingers is starting to pain again. at times
it feels like arthiritis. no ane understands what im going through and
think that im imagining it. im going back to docters for a checkup this
month and is afraid of going back on the prednisone as it made me pick
up alot of weight. is there any other treatment that i can take??
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