Name: Ritumehraa:
From:
Found_SOS_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:
From: Missouri
Found_SOS_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 H:
From: Atlanta
Found_SOS_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 R:
From: Apopka, fl
Found_SOS_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:
From: Santa Clara, New Mexico
Found_SOS_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 V:
From: Mumbai, India
Found_SOS_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 H:
From: Purvis, MS in southern Mississippi
Found_SOS_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:
From: Reno, Nevada
Found_SOS_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 S:
From: ILLINOIS
Found_SOS_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: Dynop:
From: New York
Found_SOS_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.
Name: Teresa G:
From: Toronto, Canada
Found_SOS_Via: Internet Search
Date: Saturday, July 31, 2010 Time: 07:38 AM
Comments:
help! I have had sarcoid, right orbit, since Oct. 2006 methatrexate 2.5
x 8 weekly, I have recently had severe back pain ... spine...with
soreness around both sides to ribs, xrays show some arthritis in lower
spine...some abdominal pain, it feels like my ribs are on fire and
something is pressing down my spine.. any thoughts on tumor in spine?
will have MRI sometime this month.
Name: Tammie C:
From: Harrisburg, PA
Found_SOS_Via: Internet Search
Date: Wednesday, August 04, 2010 Time: 02:12 PM
Comments:
I was diagnosed with Sarcoidosis in June of 2010. I had been dealing
with several issues at the time of my diagnosis but none of them meant
anything at the time. I had a tumor on my right index finger that just
kept growing. A few months and it tripled in size and I had it removed.
The pathology report should granulomas and my Ortho told me to get to my
primary care asap. I automatically though I was dying or he was
overreacting. Then I went home a researched Sarcoidosis. My swollen
ankles, extreme fatigue, joint pain, weakness, weight loss, back pain
all made sense to me. I went to my primary who told me that I did not
look like a sarcoid patient but sent me for a battery of tests. I came
back a week later and the diagnosis was confirmed with an xray. I had
lost 35% of my lung capacity and since the granuloma was located outside
of the lungs, he was more than positive that the disease was at stage
III or IV. My ACE was 147 and the other tests were not looking any
better. He prescribed Buspiron, Advair, Ventolin, Tramadol and the other
meds I take for diabetes. We started on a 40mg dose of methylpredlisone
for a week to see if it was going to help. It helped the cough but did a
number on my mind. I had insomnia, couldnt eat, felt euphoric one minut
and deeply depressed the next. I have not seen him since them because
his schedule was booked. I am supposed to see him tomorrow along with
the cardiologist. Since my last appointment, I have had some very
strange things happening. I will cough and cough until I vomit and it
feels like the elaphant that was sitting on my chest just got up. Two
times this has happend. I have tremors on the left side of my body. I
drop coffee if I use my left hand. My knees, elbows, ankles and feet
hurt if I sit for any period of time. now all my days are not bad but
when I do have a good day, I pay for it the next day.I am just tired and
scared most of the time. There are people who die from this and I know
that my doctor is not a specialist. I have not been referred to a
pulmonary doctor yet. No ct, pet or mri to see how this disease has
spred. I need a better solution than medication. Someone needs to tell
me what to expect, where the disease is, how to control it, when will it
be over and who can help me. If you are familiar with the central PA
area (Harrisburg) please help. Any and all suggestions are helpful. It
is nice to know that I am not alone. (Funny thing - I called the
cardiologist today to confirm my appointment and she asked why was I
coming to see them. I answered Sarcoidosis. She said huh...what the hell
is that.) Just goes to show that this disease is not as well know as
they think.
Name: Linda M:
From: South Carolina
Found_SOS_Via: Internet Search
Date: Wednesday, August 11, 2010 Time: 12:46 PM
Comments:
Does anyone else have extreme nerve pain on their legs from the lesions?
My diagnosis was three or four leg lesions and now, several years later,
my lower legs look like somebody beat them with a bat and they feel that
way too. Very painful when sarcoidosis is active especially. Always
tender to the touch. My ankles swell and hurt. Diagnosed with severe
asthma, but I swear it is sarcoidosis in my lungs, not asthma as asthma
meds do not help. Or at least I feel like they don't. All has caused me
to be very inactive, which has led to disability and can't hardly walk
now. Is there anyway to lessen the pain and dryness? HELP!?
Name: terry:
From: michigan
Found_SOS_Via: Internet Search
Date: Wednesday, August 25, 2010 Time: 05:25 PM
Comments:
i have had sarcoidoisis since I was 15 (lung) I am now 54 was treated
with prednisone I have many other ailments and now something is wrong
with my adrenaline glands...everything I have had has been "odd" and
hard to diagnose...I have also had pulmonary embolisms...I did alot of
research on my own, (who knows our body better than ourselves?) and
thanks to that some tests have been done and a mystery I feel is about
to be solved. my dr called me today and told me to come in because a
blood test I ask for came back abnormal...search and search for your
answers then take what you find to your dr. to get the help you need.
Name: mat:
From: arizona
Found_SOS_Via: Internet Search
Date: Saturday, August 28, 2010 Time: 09:27 PM
Comments:
I was diagnosed last July with Gastric sarcoidosis (supposedly very
rare) After gallbladder removal, several stays in the hospital to being
told i have stomach cancerl. Its really been a roller coaster. Several
Ct cans, MRis, endocospies, endocospic ultrasounds with biopsies.
determined gastric sardoid. the only treatment Prednisone i just find
that hard to believe. Ive been searching everywhere for an alternative
and cant find on. It seems everytime i go for a check up they give
another medication. Prednisone, azathioprine, bactrim every 2 months,
vitamin d and B. Its gone to my pancreas now i have chronic pancreatisis
creating back pain, prednisone causing emotional changes, trying to work
and have a life. Its really tough.
Name: anna w:
From: fargo nd
Found_SOS_Via: Newsletter
Date: Sunday, September 05, 2010 Time: 02:55 PM
Comments:
i have sarcoidosis
Name: Donna B:
From: Sugar Tree, Tennessee
Found_SOS_Via: Internet Search
Date: Saturday, September 11, 2010 Time: 02:46 PM
Comments:
Hello. I have recently been diagnosed with sarcoid. Interested in
learning more about it.
Name: Amy G:
From: Tennessee
Found_SOS_Via: Internet Search
Date: Wednesday, September 22, 2010 Time: 06:04 PM
Comments:
This is my first time posting. I believe that I have has sarcoid for
about 12 years. Was diagnosed about 9 ago with a lymph node biopsy. I
dont go to the doctor much, only when symptoms are too much to bear. I
know that if I would go more regularly I might get more answers to this
disease. I dont have any lung involvement, none of my organs are
affected. I do have severe chest pain-like an elephant is sitting on my
chest. It literally makes me sick and I feel like I cant breath. The
joint pain is unbearable if I do any type of activity that puts any type
of stress on them. I also have problems with my skin-I dont think this
is sarcoid lesions, as they are not sores...upon researching the
internet I believe that I have delayed pressure urticaria. Maybe that is
caused from my sarcoid. I plan to go see a doctor at Vanderbilt
University who specializes in sarcoidosis research. Maybe I will have
some luck with her. I refuse to go on steroids or methotrexate-as I have
seen the effects on family memebers from long term use of either of
those medications and its just not worth it. I feel like I am trapped by
my own body. If I do anything fun or the least bit physical - I suffer
the whole next day. Would love to hear from you guys.......A
Name: Sami J:
From: Houston, TX
Found_SOS_Via: Internet Search
Date: Thursday, September 30, 2010 Time: 08:34 PM
Comments:
I was diagnosed with Sarcoid in April 09. I spent a month in Critical
care in Knoxvlle, TN. UT Mdical actually knows a lot about this. I was
also lucky in at I was put with a Dr that was well versed in Sarcoid.
When I entered Hospital I had VERY high blood pressure, leasions in and
on my liver, kidneys, stomach, skin and lungs. My lungs aappear that I
have cancer but they are just granulonias. I also had blood clotts in my
lungs. I am in stage 3. The only thing that I had ever had was allergies
and COPD. About a year before it realy hit I started having small sores
that just would not heal. I went through three surgeries and I live with
a lot of pain. It has settled in my joints, I have RLS and lots of skin
problems. I cannot not breath well and stay tired. The only treatment is
steroids. There is no remission but it does flare at odd times. I take
Celexa to help with the depression, Requip for the RLS. Nexium for the
stomach, Ambian to sleep. Hydros to get through the day, Narvasc to keep
my BP in check. I know that this sounds like a lot but when I came out
of Hospital I was on 17 different meds. I only take steroids when
Bronchitus hits. There is no cure for it and I have to be very careful
about my liver, kidneys and lungs. Breathing treatments help me more
than anything. My eyesight is also failing. They believe that I have
brain involvment but can't tollerate the CT's. And on top of all this I
can no longer function in jobs and really hate to be around people.
Extreme panic attacks. I will be 55 in Nov. I can't get disability
because I am too educated and have no insurance. But hey ......life is
still a gift and I live each day to the fullest. Oh yea ....As large as
Houston is there are only 11 Dr's that know about it enough to treat it.
Ain't life grand????
Name: Suzan I:
From: Fayetteville, NC
Found_SOS_Via: Internet Search
Date: Friday, October 01, 2010 Time: 07:27 PM
Comments:
I was diagnosed for two years by my pulmonologist as having asthma, and
treated for that. Before I had back surgery 4 years ago, I did the preop
tests and was told that my surgery would have to be postponed as my
chest Xray had shown abnormal content. It was cloudy with what I now
know is called the "ground glass" effect. My surgeon required I have a
biopsy and my pulmonologist did a mediastinoscopy. I had calcified lymph
nodes and was diagnosed then with sarcoidosis. As I understand it, I do
not fall into the typical patient category, as I was almost 60,
Caucasian. I have been treated since with methotrexate, Prednisone and
inhalers. The symptoms get worse as I am not able to breathe well with
exertion. I still work full time and the most dreaded part of my day is
getting into the building from the parking lot, which is a little
distance. Once I get into my office I am ok. Housework is difficult, as
I do one thing and have to recover for a few minutes. I get frustrated
as I have always done for myself and now have to ask for help. My two
dear grandchildren don't have the quality of interaction I would like,
and heaven forbid I should need to chase one down. I am disappointed
that my life has turned out this way, but I also feel blessed that at
least for now I do not have symptoms in any other organs. I insisted on
an echocardiogram to make sure this gasping and hard breathing was not
affecting my heart. I think I know when something started, and it was
before my diagnosis that I had a two week seige of bronchitis which was
severe and kept me bedridden. I think whatever got into my lungs
happened then, and the granulosa began developing to encapsulate the
virus, or bacteria, or whatever it was. I had nothing like that before.
Would love to hear if you feel you might know the origin of your sarcoid.
Name: Kevin:
From: Charlotte, NC
Found_SOS_Via: Online Chat Group
Date: Monday, October 11, 2010 Time: 01:38 PM
Comments:
My best friend was recently diagnosed with Sarcoidosis or Lymphoma. I
mean they have been unable to confirm a diagnosis. They are leaning
toward Sarcoid. He currently only has Splenic involvement with some
enlarged lymph nodes. The only accessible node is in the groin. He has
been on Prednisone for about 2 months and is weaned off the regimen. He
had a complete blood count performed today and his hemoglobin was high
along with his white count. His overall white count was low. He has been
extremely fatigued and could sleep most of the day. I am trying to find
a sarcoid specialist in the US to consult. To date he has been working
with local specialist who don't seem to have a good grasp on this
illness. I would also be interested in knowing if there are any
resources about nutrition and homeopathic remedies. With sincere thanks,
Kevin
Name: Candy D:
From:
Found_SOS_Via: Internet Search
Date: Wednesday, October 13, 2010 Time: 10:21 PM
Comments:
I was initally diagnosed with a tumor on my spine but found to be
granulomas that acted as a tumor. I have been seeing doctors since 1998
and they still cannot determine if I have MS or Neuro Sarcoidosis. I was
put on steriods immediately which took care of the tumor so there was
nothing to biopsy. I will not allow anyone to go into my spine. If I
have sard - it is within my spine w hich is extremely rare and no one
seems to know what to do. It is thought I may have MS I truly believe it
could be BOTH. Have been on steriods since 2008, decradon (highest dose)
for 18 months. Terrible side effects. Taken of decradon, had a horrible
crises - was admitted to MUSC, every test uner the sun done, but was not
able to determine if MS or Neuro Sarc. I am now on Prednisone and Imuran.
Thought is was working, but have been having problems with my left leg.
Pain in upper thigh and hip, wants to buckle when I get up to walk.
Called my doc at MUSC and he upped my Predsione and Imuran. So far no
luck, things are getting worse. When I became ill initially, the
pressure on my spine has caused me to have loss of sensation in my lower
body (can stick me with a pin and I won't fill it). I thank God I can
walk and drive when doing ok. Problem is if I get a cut, I don't know
it, and i habe to be very careful of infections. In all the messages I
have read throughout the web, no one has experienced what my problem
seems to be. Doctors don't now what to do with me since they can't reach
out and touch my illness. No other organs involved at all. Wish I could
find a doctor who really wanted to take my case and try to figure out
what is going on and if MS and Sarcoidosis, make that decision and work
on a plan to help.
Name: sivaraman M:
From: UAE
Found_SOS_Via: Internet Search
Date: Saturday, October 16, 2010 Time: 06:02 AM
Comments:
I was diagnised sarcoid and treated with cartico steroid but recently
got remission. I need support and benefit from this group.please help
MURALI
Name: Timsimb:
From: Florida
Found_SOS_Via: Internet Search
Date: Saturday, October 16, 2010 Time: 12:14 PM
Comments:
Hi, I'm new to the forum. I was diagnosed with Sarcoidosis in 2008-2009.
I have not had any problems with it until now. I have noticed my skin in
certain spots has been getting lighter in color. I was wondering if
anyone else is experiencing this. Also trying to find out of my diet or
lifestyle can be a reason why this is happening now. Please email me
with any information you may have. Thanks.
Name: Liz W:
From: New Jersey
Found_SOS_Via: Internet Search
Date: Wednesday, October 20, 2010 Time: 05:55 AM
Comments:
I was diagnosed with sarcoid about a year ago. Took prednisone for 5
months. I am finally feeling close to normal except ever since I was
diagnosed I lost my sense of smell. I was wondering if this happened to
anyone else. None of my docs tell me if it wil ever come back. Please
let me know if anyone has any experience with this. Thanks
Name: J. Moore:
From: Oregon
Found_SOS_Via: Internet Search
Date: Wednesday, October 20, 2010 Time: 11:25 PM
Comments:
Hi all - I was diagnosed with Sarcoidosis in 2004, had red spots on my
arm, Dr. tried cortisone cream but no change so he did a biopsy and
found the sarcoidosis. His nurse called to advise me of the diagnosis -
I had never heard of it and had to have her spell it for me. I looked it
up on the internet and the first thing I saw was that there were support
groups - and I said to myself, "Oh hell, there's support groups for it!"
I shared that with my docter and he got a good laugh out of it and asked
if he could share that with other doctors. I had a lung x-ray and then
either a CAT scan or MRI - I don't recall which - and it was also in my
lungs. My doctor referred me to a great pulmonary specialist who
monitored for a while... then I changed jobs, health insurance and
doctors. I've never had drugs for it and I'm on more or less a
self-monitoring process now. I get winded from slight to moderate
exertion but can still mow the lawn and do other types of physical work.
Overall, it seems like no real progress of the disease over the last 4
years or so.
Name: JoAnn A:
From: Maryland
Found_SOS_Via: Internet Search
Date: Monday, October 25, 2010 Time: 08:40 PM
Comments:
I was diagnosed with sarcoidosis in 2000. Suffered with breathing and
lesions on my nose. Went to see my doctor about something else and they
sent me to Johns Hopkins. Been on Predisone and a host of drugs since
then. Diagnosed with breast cancer in Sept. 2009. My plastic surgeon
suggested I see a dermatologist closer to my home than at Hopkins. So I
visted Dr. Norman Lockshin. He was very interested in my history and me.
I felt like I finally found someone who understood what I was going
through. He, like Hopkins suggested Thalidomide. However, when Hopkins
tried to get it for me, my insurance company(who I work for) denied
paying for the medication. The pharmaceutical company is helping me with
the cost. I hope this works. I have lesions around my eyes,on my cheek,
around my nose, mouth and chin. My scalp is infected, so I don't have
much hair. I suspect there is some in my right ear and the back of neck
is showing extreme signs. I also suspect there is some symtoms in my
groin area. With all of this, my breathing is much better. My husband
says I'm not snoring as much as I use to. I hope the Thalidomide works.
By the way, I'm over 50. My husband says our making babies days are
over. We just should enjoy the sex. I'm glad I have him for support. He
has been great through all of this.
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