Lynda Appell - 12/27/00 15:23:46
My URL:http://usa.internations.net/health/redapple/index4.htm
My Email:arnica@hotbot.com
Favorite Sarcoid link: Yours

Comments:
Laurie: Warmest wishes to you, your family and your supportive, resourceful site.

vicki minck - 12/22/00 13:00:55
My Email:Minck in LF

Comments:
Your story could have been written by me. I now also have kidney stones that need to be removed. I was never told ,sarcoid patients should watch their calcium intake. Thanks for sharing.

Kendra - 12/21/00 00:13:44
My Email:VibrantK21@hotmail.com

Comments:
You are my ray of light right now. I am currently dealing with this illness. I found out that I had this illness after a severe car accident. I had to force the tears back reading your story. You give me strength.

Micki Gibson - 12/14/00 04:10:21
My Email:MickiGibson@aol.com

Comments:
This is the first I have heard of your disease, however my 14 year old daughter was diagnosed with Type 1 Diabetes in Jan '00. Keep taking care of yourself, don't let the diabetes get you down. I know you have lots of other problems, but I believe there will be a cure for that one soon!! You will be in my prayers daily, you are truly an inspiration. Micki

LaBretta - 11/10/00 05:03:11
My Email:PandaBearsDen@aol.com
Favorite Sarcoid link: none

Comments:
I was diagnosed with Sarcoid in 1997 just before Thanksgiving. It took three months of persistence with my doctor to refer me to a specialist (Rheumatologist). I woke up one morning after a trip feeling extremely tired and in pain all over. Over the ne t month, I progressed to severe joint pain, iritis (red,swollen, infected eyes), enlarged spleen, high fever and chills daily, loss of sleep, fatigue and skin problems. I knew something was severely wrong. Within two months my life had changed drastical y. The illness moved to my CNS (Central Nervous System) and caused an inner ear infection that caused severe vertigo, total loss of balance and coordination for four months. I needed 24 hour assistance with all daily functions that we so often take for ranted. God Blessed me and I recovered. In May 2000, I began to have severe headaches. After four Lumbar punctures (spinal taps), the disease has once again hit the CNS. This time on the lining of the brain (meningis). High doses of Prednisone since ay. Recovery is slow and now I need additional medication(potent) to try to combat the inflammation. Weight gain - depressing!!! Thanks for the opportunity to share. This too shall pass because my faith in God is greater than any disease!!!. Prayer and faith can conquer all. Nothing is too hard for God.

steve dyke - 11/10/00 01:01:35
My Email:csosld@yahoo.com
Favorite Sarcoid link: yours so far

Comments:
Lauri, I am 30 years young and was just diagnosed with sarcoid a couple of weeks ago. I am still confused about the whats going on now and what to expect. I already have swollen lymph nodes,chest pain, sore and blury eyes, terrible joint pain, fatigue,etc .. I appreciate it that someone who knows enouf about computers is spending some of her time to educate others about what we have. Thank You.

marie mccarthy - 11/08/00 19:17:51
My Email:jnmboteva@rbnet.com
Favorite Sarcoid link: don"t have one

Comments:
my brother has sarcoidosis in lungs eyes he also has diabetes and both lungs are damaged.what do you know about sarcoidosi running in the family and should we be tested. your web site is the best and it helps to talk to about this,i saw the montel william show 11-06-00 karen duffy also has sarcoidosis,we are learning more and more on sarcoidosis we need more money for reserch and info to help us understand and cope. god be with you and your famly and keep your head up god will be with you in your time of eed.

Teresa Gray - 11/08/00 18:38:35
My Email:tgee42@hotmail.com

Comments:
I was diagnosed with sarcoidosis in May 2000. Have been hospitalized twice, and have been unable to work since then. I also am suffering from fibromyalgia (diagnosed in June 2000). Two weeks ago tripped and fell and broke a rib! I am very fortunate to hav wonderful, caring doctors that understand the pain and suffering that we all go through. Thank you for sharing your story. My prayers are with you.

Janita Coen - 11/08/00 13:37:57
My Email:jmcoen@dellnet.com

Comments:
I don't have a favorite sarcoid link. I have never really searched for infor on the net. I decided to look this morning to see what is out there on sarcoid. I was glad to see your site. I felt kindered when I read your story. I was diagnosed with sarcoidosis in 1983 after being misdiagnosed with bronchitis a number of times over the years. I also had chest pains and shortness of breath. I had suffered joint pains and back pain for a number of years. The joint pain was diagn sed as fribomyalgia and I took medicine for that for about two years. I still have the pain sometimes but I don't bother with the medicine. In 1996, I developed a stomach problem and could not keep food down - nearly anything I ate came back up. I lost over 20 pounds. The doctors treated that with antibiotics. To make a long story short, I seem to have one medical problem after another. Now they tell me that I am borderline for diabetes, my L5 or 4 disc is swelling and pressing against my spine caus ng tremendous back and leg pain (and numbness in the leg), I have chills all the time....But, thankfully, even though my lungs are fribrotic, it is stable. So the doctor says I am ok - the sarcoid is in remission. I say, how does he know that the sarcoi is not causing all of my other problems? Forgive me, I guess I needed someone to talk to today. I am glad you were there. Janita

Mario - 11/08/00 01:54:20
My Email:sanman2268@aol.com

Comments:
i was told in Feb. of 2000, that i had sarcoid, bad chest pains, my eyes are shot very blury, bad knee and ankle pain and sweeling, and bad skin rash,and my imune system went down, stuck on 60mg of prednisone a day , on morphine, and percoset for pain, an so many antibiothics for infections, its hard to breath some times,i wish every one with sarcoid well and god bless

Kim fleming - 11/08/00 00:29:20
My Email:kimberlyfleming@netzero.net

Comments:
Thank you for sharing your story. I heard Duffy talk about her experience on television, and I wanted more information. Your site gives a very personal description of the disease and its symptoms. I will pray for you and for God to allow a cure to be d scovered. As I read your testimony, I wondered if you had experienced eternal salvation through Christ. If you would like to talk about it, please reply. I would love to share God's precious gift with you. Kim

Debbie Golightly - 10/29/00 13:10:05
My Email:dgolight5@hotmail.com

Comments:
Hi! I was diagnosed with scarcoidosis in May of 2000. I also had joint pain, swelling of the ankles and feet, very bad headaches, lungs were very week and hard to breath, chest pain (thought I was having heart problems), bronchitas two or more times a y ar. My lungs would hurt. They finally did a chest x-ray that showed a mass in my chest. They told me it looks like lymphoma. Boy, was I scared to death. A lung biopsy showed granulomas and they told me it looked more like scardoidosis. I had never h ard of that before. I started getting on the internet to inquire about the disease. I did not realize how bad it could get. I have had to take one dose of prednisone but have not had to take it regularly yet. I'm not sure my lung doctor really knows al he should about the disease. I have lost my taste and smell and he says that has nothing to do with this disease. But with some others that I have talked with on the internet their doctors say that it could be part of the disease. I would like to find another doctor to go to that knows more about this disease. Do you have any suggestions? I live in Barlow, Kentucky. Paducah is the closest big city. I am originally from Jefferson City, MO. Are there any in Columbia, MO.? How would I find out? I'm so new to this disease but it does scare me alittle. I do ache all the time in the joints especially in my lower back and ankles. If you get a chance, lets chat. Good luck! I wish you all the best and I will pray for you also! Sincerely, Debbie Golig tly

sheila collins - 10/29/00 01:24:45
My Email:Scollinsclan@aol.com

Comments:
I too suffer from sarcoid. I am in the army and so far am doing well. good luck

Debbie - 10/29/00 01:10:35
My Email:dwalden6723@aol.com

Comments:
I was diagnosed with sarcoidosis 4 1/2 years ago. My lungs are better and stable, but I have a lot of joint and muscle paid and am having a lot of diffculty with neuropathy and mental focus.

laura - 10/29/00 00:57:07
My Email:scudders3@aol.com

Comments:
My husband doesnt have all your symptoms...but he is tired and has shortness of breath also has an enlarged liver and enlarged spleen...his platlet count is extremely low...My question to you is "do you know what your platlet count is? Wondering if my hu band has what you have....Dr's have been checking for over 2ys and cannot come up with a diagnosis....Thanks Laura

Bernadette - 10/28/00 02:34:54
My Email:berncordova@aol.com
Favorite Sarcoid link: this one

Comments:
In March I discovered I also have the disease. Thank God the doctors diagnosed it early. I am in stage 2 right now with a good chance of perm. remission. I will pray for you. I will tell my whole story someday, but I am feeling a lot of the symptoms that ou describe. I LOVE THE POEM

Pam Lang - 10/24/00 23:59:25
My Email:slangsfamily@aol.com

Comments:
I am a nurse on CCU and we've recently had a patient who appears to have your disease. It was discovered after it severely damaged her heart and almost killed her. She just had heart surgery and isn't out of the woods yet, but I wanted to know what she ight be experiencing. Thank you so much for your insight.

Cheryl - 10/23/00 18:10:41
My Email:kthchrylS @aol.com

Comments:
My sister just called me this afternoon, and asked me to look up the medical term Sarcoidosis. She just received her report from her doctor from all of lab work. I just wanted to let you know that your web page is great, very informative and I will add t to my favorities. I will include you in my prayers along with my sister. A lot of times we don't know why things happen to us and sometimes it also allows us to be a blessing to someone else. Just wanted to thank you for being a blessing to us. Cheryl

Cheryl - 10/23/00 18:05:56
My Email:kthchrylS @aol.com

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CHERYL - 10/23/00 18:04:52

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- 10/22/00 04:40:14

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VICKIE MARTIN - 10/20/00 04:48:11
My Email:VMARTIN764@AOL.COM
Favorite Sarcoid link: THIS ONE

Comments:
I AM NEWLY DIGNOISED.IT HAS TAKEN THEM 15 YRS TO FIND OUT WHAT HAS BEEN GOING ON WITH ME.I AM NEAR GIVING UP.LIFE HAS BECOME TOO PAIN FULL.TIRED OF ALL THE SURG.TO DO ALL THE BIOPSY'S.THANKS FOR YOUR LINK IKNOW THERE ARE OTHERS LIKE ME. VICKIE

karen kelly - 10/19/00 00:02:42

Comments:
thank you for such a pretty web site

Christina - 10/18/00 05:45:27

Comments:
My heart goes out to you all with this disease.

Doris Brewer - 10/13/00 12:56:28
My Email:dbrewer@epix.net

Comments:
Just found out this week our 31 year old son has sarcoidosis (previously thought it was cancer so I definitely believe this is the lesser of the two evils). The biopsy saved him from having to go on chemo. Now we're trying to find out all we can about s rcoidosis. I wish you luck with this and with your diabetes. We'll be praying for you.

a. croft - 10/12/00 20:52:27

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Connie Snyder - 10/10/00 16:42:26
My Email:Constermonster@Juno.com

Comments:
Hi Laurie, I have Sardoid too. I was diagnosed in Sept. 1995 and am currently fighting my third bout of it. The first time I was not diagnosed in 1992. I am pleased to read your story and honored to sign your guest book! Connie

Crystal Spurlock - 10/10/00 02:07:09
My Email:crystal_spurlock@hotmail.com
Favorite Sarcoid link: all

Comments:
I know what you are going throw. I am 18 years old. I found Oct.2,2000 that I had Sarcoidosis... If you want to E-mail me thats fine. Thanks, Crystal

Sharon O'Neil - 09/26/00 17:04:04
My Email:spt59@yahoo.com

Comments:
I do not have a favorite Sarcoid link just yet. I'm just looking for some help and answers. My daughter (age 32) was diagnosed with Sarcoidoisis in May, 2000. We are overwhelmed with this illness and frustrated at our attempts to find a doctor who will treat her with intelligence, compassion, understanding, and respect. We understand there is no cure and very little treatment available and are looking for some kind of guidance or suggestion as to how to cope with this mysterious disease.

patti - 09/22/00 04:16:41
My Email:ffblo@aol.com

Comments:


Angeles Aguilera - 09/04/00 20:16:23
My Email:angelesaguilera@teleline.es

Comments:
Thanks for your page. Iīm from Venezuela but I live in spain, last saturday my sister in law die of this sickness because they didnīt found what she have on time and starting proving with many medicines for anything, I think that she didnīt have to die be ause she was too young, only 30 years and have a daughther of 4 but her heart didnīt resist all the medicine that the doctors give to her, they throgh it was tuberculosis first, them another disease of the lungs and only one week before she die they say i whats sarcoidosis but they didnīt chek her heart and was so debil and she couldnīt made it, Iīm glad that you are fithing against your sickness and I support you with may heart in the memory of my sister in law, her name was Verónica and die in September 2 of 2000, it really hurts so much and she didnīt have the opportunity to fight because in two months god calls her. Donīt let the doctors say that everything is ok if you feel that is not like that be strong and go one because you still have the opportun ty that someone find a cure for this mistery disease, go on and donīt stop. I hope that someday when iīll visit your page again a can read that you got the cure and are ok. Iīm sorry if can express very well but my english its not so good. God bless you.< r>
JAN MILLER - 09/03/00 11:34:58
My Email:JBMILLER43@AOL.COM

Comments:
LAURIE, THANKS FOR SHARING ! HANG IN THERE! I THOUGHT I HAD IT BAD, BEEN DIAGNOSED SINCE MARCH OF 1991. STIIL HAVE BAD DAYS, THE ARTHRITIS IS A "KICKER".THERE ARE DAYS WHEN IT'S ALL I CAN DO TO JUST GET OUT OF BED, BUT SOMEHOW I KEEP GOING? ANY FRACTURES FROM YOUR BOUT WITH SASRCOID? I'VE HAD TWO.. LEFT ANKLE AND LEFT WRIST. GOOD LUCK, AND GOD BLESS.

Marcia C.Moses-Nocera - 08/28/00 23:13:57
My Email:MARCYGSD@aol.com
Favorite Sarcoid link: This one has everything

Comments:
I think your web-site is great. My very dear friend has just been told he has Sarcoidosis.I want to help him in every way that I can. Thank-you so much for creating this page. God Bless & Take care.

Tammy Fox - 08/23/00 02:09:18
My Email:shatzyfox@yahoo.com

Comments:
First of all I would like to say Thank You for your web page. My father has sarcoidosis, which he was first DX with it in 1991. Since then it has progressed. I am just trying to learn all I can about it, and share the information with my father. Once gain Thank You!

jennifer rongaus - 08/18/00 20:45:25
My Email:jrongaus@mission-viejo.com

Comments:
8/21/00 I go in for needle C.T procedure. I've had chest x-rays,2 C.T. scans, and a bronchosopy 2 weeks ago.It started in Dec. of 99 with chest pains, shortness of breath and cough.My breathing has improved since I started exercising 5x a week. Nothing ha been confirmed at this point, just suspected sarcoids.I have enlarged glands in my chest that cause pain all day long and a cough.I pray all the time that it starts going away.I'm so sad for my 6yr. old boy. I'm a single mother and if any thing where to appen to me there would'nt be anyone to love him the way I do.Whats next for me ? I'm really scared but keep a positive attitude that it will start going away before it gets worse.Althogh It's a bit overwhelming , thank you for all the information.This is the the first day I learned anything about sarcoids other than what my docter has told me . Which was'nt much.

Jim Mallea - 08/18/00 12:43:52
My Email:james.mallea@tfn.com

Comments:
I just wanted to say thanks for this web page. The 'My Story' portion was extremely helpful as I have been sick for about six months and they are telling me I either probably have sarcoid or cancer. After going through your homepage I realize that my sy ptoms don't appear to be as severe as yours, but I have most of the ones you do. I'm up for a biopsy next week, so I'll know soon enough, but your description sure make me think I have sarcoid. Thanks again.

jim - 08/16/00 16:42:24
My Email:jim.bedford@daelnet.co.uk

Comments:
thanks it made me cry but it helps because I know I'm not alone Jim (aged 52)

LaLon Hardy - 08/02/00 04:24:24
My Email:Linda_lhardy@hotmail.com

Comments:
My mother has Sarcoidosis. She is taking Prednisone and sometimes gets so emotional and angry that it scares me. She is a little better now and says she thinks that she acted that way because she was coming off the Prednisone too fast. Do you think this i true? Do people usually stay off Prednisone when they go off of it. The way she acts when she takes Prednisone scares me. Can Sarcoidosis cause neurological problems? Please respond! LaLon Hardy

LISA FRANKLIN - 07/24/00 02:38:31
My Email:goldenkit_t@excite.com

Comments:
I just learned last FRIDAY that i to have the diease now i wonder if last year when i was diaginosed with hep. c if it was really sarcodosis i,m trying to learn more .thank u lisa franklin

Tim Rus - 07/22/00 20:55:48
My Email:trus438366

Comments:
Just trying to learn a little about my Sarcoid.

Angela Smith - 07/18/00 13:20:05
My Email:W_Drewett@hotmail.com
Favorite Sarcoid link: Laurie's

Comments:
I have sarcoidosis,I've had it for 12 years.I live in P.E.I.,no information,nobody really knows anything.Because of this disease I now have asthma in and out of the hospital,Fatigue,skin problems all over my body,insomnia,sore joints,feeling ill all the t me.I've lost quite a few pounds.I was put on prednisone the first 5 years straight and blew up to 201lbs.Then I found out how bad prednisone is and made them ween me off of it.It's been about 4 years that I only take it when extemely nessecary.I feel heal hier not being on the drug,but by not being on the drug I have to deal with the sick feeling and fatigue and insomnia.It's nice to know there are other people who can relate.Sincerly angela smith

Debbie Boggs - 07/16/00 20:54:54
My Email:dboggs@chartertn.net

Comments:
Sorry to hear you have had more problems. Just found your poem and boy, is it realistic. I could have written it myself. I had Sarcoidosis around 5months before diagnosis. I was put on 40mg of Prednisone per day and have weaned down to 5mg each day. My joints ache so bad right now and I guess that is why I am back on the computer looking for someone or something to help with the stress from the pain. I also have a big scar on my right shin from an auto accident 17 years ago. Because of the predniso e I have taken, the pulmonary doc, orthopaedic doc and my two primary care doctors feel I may now have cancer in my leg. I would be unable to have this properly diagnosed or treated until I am off the prednisone for some time. Gee, I hope this ends soo . Take care... we are in this thing together.

trice - 07/16/00 13:08:52
My Email:tricedav@aol

Comments:
I was diagnosed over ten years ago. I thought this was over,because I have not had any symptoms in years but I had to have another biopsy on my legs and I think that it is not over. Thank you for having this site so that I can see that I am not the only one.

ghooper - 07/15/00 03:04:26
My Email:ghooper@aol.com

Comments:
don't have a favorite link - this is my first time - i was diagnosed 25 years ago, no problems whatsoever, then a few years ago i started with bronchitis, eery month; - finally talked the doctor into getting x-rays - then the fun with the pulmonary specia ist started - right now i am on prednasone, 20mg a day, - feel great, and thank you for your page - hope all goes well for you....P>S> - although i say i feel great, i do have shortness of breath, i am fighting the weight with the prednasone, and i get ery tired -

Raquel Christodoulou - 07/14/00 15:11:46
My Email:rdoulor@aol.com

Comments:
In 1992, I was sick and in and out of Dr. offices for 2 years, It made me so happy when the Dr. finally said I had Sarcoidosis. It had been a long journey of clueless Dr's and their suggestions that it was all in my head. Yes outside I looked fine but ins de I was growing weiry and frightened at the thought of spending the rest of my life surrounded with all this pain and nowhere to go for help. I would find myself engulfed with nightmares of drowning, flash floods would take me away, this was my body tell ng me I was drowning from all the fluid I was retaining. Again where could I go, who would I dare tell without the, again fear of being told its a mental problem. Are you stressed? Are you having personal problems??????? This was stressing me, the DR's w re stressing me. They had no clue so it must be n my head. I am in remission, still the aches and tiredness control any quality of life. It's the not knowing when and where it will creep up,the challenges of trying to express the symptoms and understandin the expressions on Drs. and other peoples faces. Clueless and of course the "BUT YOU LOOK SO GOOD? " Dr's need to learn that it makes a better Dr. the one who can be honest and say.."I do not know yet, I want to help you by eliminating the obvious. DO NO TELL US "ITS IN YOUR HEAD" because of your lack of expertise. We live in a world which has expanded in many areas where Health issues are cocerned, yet it still has far to go and many legitament complaint to investigate. I am sorry for all those people w o made me feel stupid and mental for they will someday realize how Vulnerable we all are. Thank you for letting me share my feelings. I felt really good reading your poem and seeing your picture. Thank You. Raquel

Winnie Ryans - 07/04/00 19:39:34
My Email:Fryans4@aol.com
Favorite Sarcoid link: www.lifeandbreath.org

Comments:
Your website brought tears to my eyes....I miss my mother! Thanks for doing what you are doing to get the word out.Please take care.If I can do anything, don't hesitate. We just recently had our second fundraiser to raise funds toward research for sarcoid sis. Oh, how I wish things were easier.

Nancy Cole - 06/24/00 21:20:29
My Email:nlcole@webtv.net

Comments:
Hi! I am so glad to find someone with this dreaded disease. They found my scarcoidosis thru biopsy of a mass of lympnodes in the stomach. As a result I have cirrous of the liver, and scarring of the lungs. I have been on prednisone, gained 70 lbs, whic I didn't need to begin with. I went from ACE level of 90 to 29. The doctor lowered the prednisone, and I am right back up to ACE level of 92. I am just recovering from colon surgery and scared to death of what will come next, as it all seem to be tied nto the scaroid. I too have the horrible aches and pains you all talk about. My daughter is great to help me, but I feel so guilty taking so much of her time. Very depressed. Now the doctor wants me to go on Methotrexate. I looked it up and it has sid effects that can come back years later. I have been fighting the return to prednisone. Thank you for this website. I only have the webtv so I can't join in on any of the chat rooms. It helps to fing other have the same problems as I do. Would like to e mail correspondance with anyone who feels like a pen pal. Thanks again for your site.

Jimmy Sturdivant - 06/22/00 03:25:30
My Email:kms@vnet.net
Favorite Sarcoid link: none

Comments:
I'm so sad it took the doctors that long to diagnose you. I was diagnosed within two months after I first started feeling bad in late April early May 1996. One doctor said I had lymes diseases from a tick bite. I went to 5 or 6 doctors before I was dia nosed. I was so presistent the doctors hated me telling them "that is not what's wrong with me". I did not know what my problem was and I had never heard of sarcoidosis until a Dr. Rolband diagnosed me and sent me to a pulmonary name Dr. Carl Smart. His name is well suited for him. He put me on presinone and I was feel ng normal within 2 hours. I was on and of presinone from July thru February 1996. "Got big as a horse"...I have not had any problems until now. I was on simi-annual then annual check-ups. My muscles ache really bad. I will see him on June 29th, 2000. I think I need it. Good luck Jimmy.

Lanse Davis - 06/21/00 14:54:10
My Email:BlackSwim@aol.com

Comments:
In 1989 I was diagnosed with sarcoid. It 'only' took about 3 or 4 months to figure it out. I thought I was in remission since about 1991 (though have had elevated liver s test throughout). I am beginning to have symtoms again, shortness of breath, join pains, and greater fatigue, but my ACE levels are normal. Anyway, best of luck to you!!!

Sylvia Darnell - 06/19/00 13:28:31

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just found out that this disease is what makes me feel so bad. Some days are worse than others.

Kathleen Killingbeck - 06/15/00 00:43:23
My Email:Kathleen@coslink.net
Favorite Sarcoid link: N/A

Comments:
I was very glad to have found your sight. I was diagnosed with sarcoidosis in april of 1998. I have read most articles within my reach but they all pretty much say the same thing. God Bless and wish you happiest of times to come,

Janice Lynn - 06/12/00 23:59:53
My Email:rjlynn@bellsouth.net

Comments:
I have just been dianosed. I have never heard of the diease. Went to the doctor's to get some bumps off my neck. Test came back as this. I have had some of the symptoms for a long time. I have Lupus and I have always thought the pain and all the rest was that. I was on prenisome for 2 years and I refused to take the anylonger. I could not tell it did a thing. So I have been living on pain pills.

pamela beasly - 06/11/00 14:17:32
My Email:pam_beasley@hotmail

Comments:
I thought that your poem was so nice it made think that i not suffering alone i also have lupus which is not too bad

hope smith - 06/07/00 23:29:36
My Email:dvdndhps@aol.com

Comments:
i was just diagnosis with sarcoid, my spleen is very enlarged, i have a dry cough that never goes away, i run fevers all the time, i've lost 30 lbs. and the bad thing is im also a diabetic. i pary everyday that something can be done about this disease

faite123@aol.com - 06/07/00 05:48:40

Comments:
thanks, laurie! I don't know if I have sarcoidosis or not - waiting on CAT scan, etc., but regular MD mentioned that tissue mass in my lung plus the symptoms might be this. So scared. So scary. Trying to make it through one day at a time, like you sai ! Thanks again, Marge

Cherylle - 06/04/00 23:04:35
My Email:cscale99@aol.com

Comments:
I enjoyed your page. I have just been diagnosed with Sarcoidosis. I have a long way to go. Your web page was nice. thanks

PAT. FENISON - 05/31/00 01:03:28
My Email:FenisonP@cshs.org

Comments:
This is my first time to look into the internet regarding sarcoidosis. Maybe I do not have a computer at home, I am at work. I have had sarcoidosis for 20 years. I do not have as many symptoms as you, but I understand some of the things that you are going through. I pray for all of those who do have this disease. But each day I am grateful for the things that I can do. Keep looking up and trusting God for one day at a time.

elmer glendenning - 05/24/00 15:14:02
My Email:eglenden@unb.ca

Comments:
HI I TOOK PYCNOGENOL FOR MY SARCOIDOSIS AND IT WORKED VERY WELL

Theresa Humphries - 05/17/00 23:36:09
My Email:thambitious@aol.com

Comments:
Today it was confirmed that I am in Stage II of Sarcoidosis. On 4 May 00, my doctor performed a Fiberoptic Bronchoscopy with a Biopsy and the test came back positive. I will soon start my medication, Prednisone for 90 days; 2(40mg) daily for 8 weeks; 1 1/2 (30mg) for 2 weeks and 1 (20 mg) for 2 weeks then I must return to my doctor to how I am doing. I am so very scared of the side effects of the medication. I have read and heard nothing but horror stories. What am I to expect?

Margaret - 05/09/00 06:39:25
My Email:megrose43@aol.com
Favorite Sarcoid link: sarcoidosishelpline.com

Comments:
Enjoyed the poem (my sentiments exactly). I enjoyed your web page. It was very informative!

Brenda King - 05/04/00 17:31:12
My Email:bking@sea-pha.org

Comments:
Hi Laurie, I have sarcoidosis. I woke up one morning about 6 years ago and could not move, every bone in my body was hurting. I took my doctors months to diagnose my condition. I went in to remission for almost 2 years and have recently starting having severe fla e ups. My symptoms are pretty much the same as yours. I take Prednisone and it makes me tired, I've gained pounds and can't seem to lose them. Excersice is not a option because I hurt so bad. I get shortness of breath just walking up the stairs in my wn home. I never know what I am going to feel like when I wake up in the morning. I would not have made it through this without the support of my husband and family. Support is very important when something likes this happens. Hang in there, we need p ople like you to give us encourgement and hope.

sharon mcintire - 04/22/00 03:40:00
My Email:smcin1214@aol.com
Favorite Sarcoid link: Kipy's Place/Chat Room

Comments:
Hi, Laurie. Glad you're doing better. I've had sarc since 88 and am doing well, but can relate to the fatigue, shortness of breath, and mucle aches!

Darlene - 04/19/00 20:09:06
My Email:dar_dar04@hotmail.com

Comments:
My bestfriend Kellie was recently diagnosed with Sarcoids. You would never think that it could happen to someone so special, but it does. I didn't know how to react to her at first, but I have become more comfortable around her. We still have fun and talk about old times. Its hard but there is nothing anyone can do.

- 04/18/00 08:17:22
Favorite Sarcoid link: wish I did'nt have one

Comments:
I was wondering if the pain's you get are very sharp and start about the boob area go up the side of your neck and down your arm into your fingers. I have the disease and I only found out cause I kept nagging my doctor about really sharp chest pain's anf hortness of breath. They rulled out asthma. I have been looking for symptom's of the diseaes other than the usual that is written every were. well I hope that all the suffering people with scarcoidosis all the happiness they deserve and wish you well.

darlene - 04/14/00 03:29:06
My Email:oneacrosstwodown@aol.com
Favorite Sarcoid link: fightnbak.com

Comments:
pleased to meet you laurie. enjoyed reading your story. sounds very familiar to me. im not quite as advanced as you but have many of the same things you do. its a bummer for real. my faith inGod is what keeps me going tho and the love and support of my fa ily and friends. i am so blessed. i would love to talk to you sometime. im 48 have a great husband, one child,(daughter)and one grandson and a granddaughter on the way. they are my life and i dont intend on letting a little thing like sarc get in the way f enjoying them. ill look forward to hearing from you. have a jesus filled weekend and life for that matter. love in christ. darlene

Mike Farley - 03/20/00 18:48:54
My Email:mikefarley@madasafish.com
Favorite Sarcoid link: www.blueflamingo.net/sarcoid

Comments:
I'm praying for you, Laurie. I was diagnosed with sarcoid 1972, lungs, skin; 1984 liver, spleen, skin again, plus lungs of course! Prednisolone didn't feel too good, but somehow what with that and much prayer, I've been in full remission since 1989. God bless you, Laurie, and thanks for your excellent web page. Yours in Christ Jesus, Mike.

Zona K Smith - 03/20/00 01:31:51
My Email:zonak@cyberhighway.net

Comments:
Thankyou for your letter of information, it sounds all to familar, I am just learning computer and how great to find people in same boat. I am 62 and grandmother of 7, Watercolor artist and have a great family for support. I am looking forward tobeing mor helpful in the future as soon as I learn how this machine works. In the meantime keep up the good work. Zona

Christine Johnson - 03/19/00 22:35:53
My Email:cchri64315 aol.com

Comments:
I also have had sarcoid since 1993

Wanda L. Carter - 03/08/00 00:18:28
My Email:WLaRueJazz@aol.com
Favorite Sarcoid link: use to be the bb here

Comments:
I have had sarcoid since 1976. I have many of the same signs you mention, but have never had to go on any medication. In 1996 I became very short of breath and they found that I was throwing blood clots, so I am now on oxygen when I am up walking around, exercising and sleeping. I was lucky, if you can call it that, because my doctor was new and saw that the shadow on my lungs were on the inside and thought right away that it was sarcoid. I was in our local hosppital for a battery of test, which came to no conclusion so I went to the Cleveland Clinic, which is just 30 miles from here and was diagnoised. In 1986, almost ten years to the day I was diagnoised with Rhumathid Arthritis, seperate from the sarcoid. I don't complain, and I love your poem, because God has used me to help tell others about Him and how good He has been to me. There is a reason for all of this. I had heard that depending where you have it, it could go away, but not for me yet. Enough about me. Please tell me more about you. I like the pages better than the bb, but there are less people here. May God continue to bless you, Wanda

Joe Forcella - 03/06/00 21:37:10
My Email:WTF714@aol.com

Comments:
I guess it's comforting knowing your not alone

marlene fincher - 03/04/00 19:09:36
My Email:marlene_fincher@hotmail.com

Comments:
i am so depressed it is starting again today . my joints hurt so bad i ache all over, i can't quit crying i know it's starting over.. i wish i felt better.. don't we all... I woke up in the night my knee killing me and i said to myself what can it be. I didn't rest much I tossed and i turned I realized then sarcoidosis returned It sneaks up on me when I least exspect it . it makes my life even more hecktic.. laying aro nd sure doesn't help. It only causes me to feel sorry for my self . so again i will get up and battle through this day oh please oh please GOD make my sarcoidosis go away.

PHILANDER WICKS - 03/02/00 04:51:12
My Email:PHILANDERWICKS@AOL.COM
Favorite Sarcoid link: N/A

Comments:
I'VE HAD SARCOIDOSIS SINCE 1987 AND I'VE LEARNED HOW TO LIVE WITH IT. I WAS ON ACTIVE DUTY IN THE ARMY FOR 15 YEARS, I JUST GOT OUT IN SEP 1998. I STILL FIND IT VERY DIFFICULT TO DEAL WITH THIS DISEASE, BUT I'VE GROWN TO ACCEPT THE THINGS' THAT I CAN'T CH NGE. AS MY FRIEND AND I ALLWAYS SAID AND I QUOTE. "THERE'S ALLWAYS SOMEONE WORSE OFF THAN YOU ARE" HIT ME SOME TIME AT MY E-MAIL ADDRESS!!!!! LATER PHIL

Brian Kalleshave - 02/22/00 19:15:47
My URL:http://w1.1353.telia.com/~u135301502/Index.htm
My Email:brian.kalleshave@teliamail.dk
Favorite Sarcoid link: http://www.island.net/~rpmdiag/sarcoid/sarcoid.htm

Comments:
Thanks for a very informative site. I am trying to start a support group in denmark. But there is not much support from the medical community. And very few patients.

JOYCE - 02/21/00 09:56:53
My Email:Jjtoan@aol.com
Favorite Sarcoid link: all

Comments:
hang in there, my husband was diagnosed in 1976, they gave him less than 6 weeks to live, but praise god, he over came, and he lives to- day. its a fight, but with god, it is easier.

LG - 02/18/00 23:52:25
My Email:leahita@aol.com

Comments:
I have sarcoidosis I do not know what you mean by your favorite site link. I wouldlike to join a support group.

LG - 02/18/00 23:51:30
My Email:leahita@aol.com

Comments:
I have sarcoidosis I do not know what you mean by your favorite site link. I wouldlike to join a support group.

LINDA PARKS - 02/18/00 05:51:20
My Email:FOURPARKS2@bbnp.com

Comments:
I`M NOT SURE ON LINKS, I`V JUST STARTED ON THE COMPUTER SO FORGIVE ME. I FOUND OUT 12 YRS. AGO I HAD SARCOIDOSIS BUT IT WAS IN REMISSION BUT SINCE WE MOVED INTO A NEW BUILDING AT WORK THE FIRST OF THE YEAR IT HAS COME BACK WORSE THEN EVER. E- MAIL ME WHEN YOU CAN. THANK YOU, LINDA

leisa gibson - 02/07/00 23:18:30
My Email:leshayg@aol.colm

Comments:
Dear Laurie: I hope you are well, but I must say I hope this email reaches you very soon. I have sarcoidosis and I have studied it. At first I did not know what was wrong with me but have since been diagnoised with the disease. Listen, I found on the internet that M lantonin was a natural cure for the disease. I have used it 10mg every night. It stopped all my syptoms, shortness of breath, fatigue etc. Please try it. You cannot od on it. There was some studies done in Japan that found it cured the worst cases an they were looking for participants. Please try it. At the every least get on the internet and do some research. Thanks Leisa

RUTH - 02/07/00 17:32:43
My Email:RENEMCL@AOL

Comments:
HI! MY NAME IS RUTH. I TOO HAVE THE DREADED DISEASE. I WAS DIAGNOSED IN 1996 AT THE AGE OF 23. IT WAS IN MY LUNGS AND DIDNT EVEN KNOW I HAD IT BUT SUFFERED FROM REALLY WEIRD STOMACH PAINS AND IN THE ER ONE NIGHT THEY DID A CHEST X-RAY AND FOUND IT AND I W S PUT ON PREDNISONE AFTER A BIOSPY, AFTER A FEW MONTHS OF THE TREATMENT I WAS TAKEN OFF AND WAS IN REMISSION AND HAVENT HAD A PROB SINCE EXCEPT I GET REALLY BAD JOINT ACHES. NOW WE ARE MARRIED ALMOST 5 YEARS(WAS DIAGNOSED RIGHT AFTER OUR FIRST WEDDING ANN VERSARY. WE HAVE BEEN TRYING TO HAEV A BABY FOR A LONG TIME AND NOW I AM TAKING FERTILITY MEDICINES AND DOING ALOT OF PRAYING THAT THEY WORK. I LOVED YOUR POEM. I AM ALSO A NURSE. I AM GLAD THAT THERE ARE SITES LIKE THIS BECAUSE WHEN I WAS FIRST DIAGNOSED THERE WASNT MUCH INFO AVAILABEL AN I FELT VERY ALONE, THANK GOODNESS I HAVE A WONDERFUL FAMILY AND HUSBAND. I WOULD LIKE TO BE PEN PALS IF THERE IS ANYONE OUT THERE THAT JUST NEEDS SOMEONE TO LISTEN TO SEND ME AN E-MAIL. GOOD LUCK TO EVERYONE AND GOD BLES .

Jan Veneman - 02/05/00 21:49:34
My URL:http://www.sarcoidosis.net
My Email:webmaster@sarcoidosis.net
Favorite Sarcoid link: all about sarco

Comments:
A verry nice site go on!

rhonda - 02/01/00 08:40:19
My Email:rlane12629@aol.com

Comments:
I read your web page...it sounded exactly like my story up to the diagnosis. I am 38 yrs old,and I was diagnosed a year ago, and have not recieved any form of treatment. I am terrified. The more i read and study, the more terrified i become. You are the f rst person i have contacted, because our stories are so similar. Can you please write to me? I am desperate for advice and guidance. If not, than i do wish you luck on your treatments, and pray for your health. Thank you for reading this.

j.johnson - 01/30/00 06:16:33
My Email:sustain1@msn.com
Favorite Sarcoid link: sarcoidnet the london ontario sarcoidosis information center

Comments:
thanks for sharing

Lynn Eberle - 01/30/00 01:17:03
My URL:http://geocities.datacellar.net/lynneberle
My Email:eberle4@earthlink.net
Favorite Sarcoid link: World Sarcoidosis Society

Comments:
I was so sorry to hear of your current flare up! Keep your spirits up and don't give in. I have Pulmonary Sarcoidosis and diagnosed in August 99. My web page tells my story. I was wondering why so many people in the health care profession seems to develope sarcoidosis? I am not in that area myself but so many people seem to be. Maybe the virus theory is valid. Nurses seem to get but not many doctors that I have seen. You take care, my prayers are with you. Lynn

Kim - 01/29/00 18:58:37
My Email:Kimmala3@aol

Comments:
Dear Laurie, great poem.Just happened upon your site.I am a nurse, Diagnosed in 92. Lung,liver, lymph,joint and eye involvement.Some docs don't know the disease and treat anyway.I have a great doctor,I've seen to many patients overmedicated. Treat the symptoms not the numbers.Can't cure it just control it.God bless and keep well.

Dena - 01/21/00 13:57:18
My URL:http://geocities.datacellar.net/Heartland/Lake/2801/Stories/Sar.html
My Email:DM8562316@aol.com
Favorite Sarcoid link: Everyone we've listed on our URL

Comments:
Dear Laurie, Thank you so much for giving genuinely and unselfishly of your time and knowledge in the fight against Sarcoidosis. Your story is well written and I can well relate to it. I have been diagnosed with Sarcoidosis since 1995. It has so far be n isolated to my lungs, but has done significant damage. I may have to be put on the lung transplant list. God Bless You for the wonderful information you are sharing with others. Take care, my friend. Even the guestbooks bring comfort with the shari g and caring from others.

Quintard Hurt - 01/20/00 11:32:04
My Email:quintardh@yahoo.com

Comments:
HI Laurie you have a great site its my first visting.I was dx with sarcoidosis in 71.from 71 to 95 I have had 3 strokes 3brain infections loss of vision in one eye and loss of hearing in left ear. it could be wo st so I don't complain.keep up the good site.GOD bless you all.......QUINT

Joyce Norris - 01/13/00 17:30:08
My Email:joygen@gmi.net

Comments:
I just found your web page. I also have Sarcoidosis . I found out in 1983 after bing sick alot. I have it in my lungs and in my eyes. I also have arthritus . I have good and bad days. I wish they would find a cure. I have no web page. Thank you Laurie for the information.

mike - 01/10/00 04:47:24

Comments:
I was diog. w/ sarciod in 92.I thought my life was over. All the drugs didn't help.I couldn't breath. I put the word out to everyone I knew who went to church, to pray for me. the last x-ray taken my lungs are clear! there is a cure and his name is JESUS CHRIST read JAMES 5:13-15 in the bible

sanda flint - 01/05/00 20:21:24
My Email:sweetbutter43@earthlink.net

Comments:
i to have sarcoidosis...........my fmily doesn't understand i feel as if i am all lone ...........but i do have my internet friends and they keep me sane and a great doctor with a very caring and loving wife............helps me to deal with this.......... .pray changes things......... sandra

dee harding - 12/31/99 16:48:07
My Email:mhardingts@aol.com
Favorite Sarcoid link: http://www.adam.com/ency

Comments:
My favorite link details neurosarcoidosis. My neurologist needs to read it. Thanks for all the info. I recognized so many symptoms. I will probably go to Johns Hopkins in the spring; I will be visited a son who is on staff there and might check out their Sarcoid Clinic.

Paula - 12/26/99 13:02:49
My Email:.com

Comments:
Just found out that I have sarcoidosis. Are scared to deah because of all that I have read. Where I work the air is bad and couldbe the cause?

Pamela - 12/26/99 05:50:20
My Email:Millenia718Aaol.com
Favorite Sarcoid link: McDougal the Bear

Comments:
I was just diagnosed with stage 3 sarcoid I know How you feel.

Ken Ross - 12/15/99 14:45:50
My Email:tarzan1024@juno.com
Favorite Sarcoid link: D&D sarcoid message

Comments:
Laurie...Just got on line to look for help. I've had sarcoid for 19years and I too am stage four with fibrosis etc. Been taking pred for 10 years. I wrote a letter on how to combat pred and effects. It works. E-mail me. I would appreciate it. Sincerely.. .Ken

J.Veneman - 12/15/99 13:57:58
My URL:http://www.sarcoidosis.net
My Email:boeck@hetnet.nl
Favorite Sarcoid link: http://www.sarcoidosis.net

Comments:
Nice page. Look et ours. Mayby we can link!

Ken Dunwoody - 12/13/99 05:07:26
Favorite Sarcoid link: kdunwoody2@aol.com

Comments:
Laurie- Thank you for sharing your story.

Jessie Houston - 11/18/99 18:44:05
My Email:freedy99@ivillage.com

Comments:
I do not have a lot of knowlege on the use of the computer but I do know some this is why I did not put in favorite sarcoid link, but I did enjoy your poem and the information you provided concerning sarcoid, I did not know so many people have been diagnois with the disease, when I was diagnois in 1991 I was told that not a lot people contracted the disease, but I see there are many and it a very mystery disease because if you do not have a good physician who will listen you will get very depress and that is what happen to me, they would only give me predisone and tell me that will make me feel, yes it did and total weight gain 50 pounds and I hate being over weight and that really made me feel bad, do the dr decided to take me off the predisone slowly, which I had take for two years, no difference in my breathing, I have changed doctors three times no success, with to specialist everyone wants to put you on predisone, I really hate the drug, but I have put my faith in God and I am not taking the predisone, right now if the weather is mild I am ok and I read that sarcoid sometimes comes from stress and for the past month I have been under stress and I have also gave all the problems to God also and quess what I am not coughing and I do feel a lot better, I did find someone in my city to talk too, I was trying to purchase a home and to find out the agent has been diagnosis with sarcoid also, but he is in remission now, I feel a lot better knowing that it is not only myself that feel this way, I hope God will bless each one of us that has this mystery disease which is not a mystery to him. God Bless and hope website is just great!!!!!!!!!!!!

Ken and Debi Laughlin - 11/18/99 02:51:59
My Email:wickedteaser@yahoo.com
Favorite Sarcoid link: this one!!!!!

Comments:
Wow what an awesome piece of poetry! my husband Ken has this terrible Disease!!! The hell one with this torment must pay! would love to correspond with you some time. best wishes the Laughlins

Dee Condon - 11/15/99 19:39:48
My Email:

My Email:DMCONDON38@AOL.COM

Comments:
Thank you for theinformation you shared with all of us with Sarocidosis, I felt like I was the only one with Sarcoidosis until I began looking through the internet, I also have it in my lung I wish you the best and god bless. Take care of yourself and aga n many thanks....... Dee Condon

cindy - 11/10/99 02:22:57
My Email:bolesbunch99@aikenelectric.net

Comments:
i was just diagonised today and i am searching for any and all infor on this terrible disease. i do not know anything much about it, i would appreciate any input you have. i have other medical problems also, so i have a long journey ahead of me... thank for listening.....

George Cunnikin Jr. - 11/04/99 19:56:20
My Email:GCunnikinj@aol.com
Favorite Sarcoid link: Net Surfer

Comments:
Hello just surfing through I thought I'll drop a few lines. I've had Sarcoidosis since 1988 and every effect anyone can name I've had. All medications the doctor's can possibly prescribe I've tried. The ones that seems to work causes side effects and I have to get off them. I'm back on prednisone 20mg I'll continue taking that and praying that they find a cure for this disease.

ade kelly - 10/30/99 11:56:37
My Email:ade kelly@.com
Favorite Sarcoid link: yours

Comments:
i have had this disease since 1985 and its about time something is found to cure it. isuppose the only good thing is your not the only one to have it. bye coventry england.

Kipy - 10/26/99 05:35:41
My URL:http://http://community-1.webtv.net/Kipy1/KipysPlace/index.htm
My Email:Kipy1@webtv.net
Favorite Sarcoid link: http://www.WorldsarcSOCIETY.com

Comments:
Hi Laurie, I have been here to your site several times. I thought I had signed your guestbook before but, I guesse I didn't. I love the cute little poem. Boy, can I relate! I see where we are Web Ring Sisters...I hope to see you in the SarcoidBuddies Chat ro m one Wednesday night. Chris is usually there every Wed. night. Just go to Kipy's Place for instructions. Take care my sister-friend and keep smiling! Kipy~~~~<>< xo PS Thanks for signing my dream book.

sandra flint - 10/24/99 15:58:21
My Email:sweetbutter43@earthlink.net

Comments:
This is a great site..........i to have sarcoid and i am just ryping to learn to live with it....

JanisD - 10/24/99 07:56:41
My URL:http://homepages.msn.com/SupportSt/silver38/index.html
My Email:jdegouff@up.net
Favorite Sarcoid link: Don't Know?

Comments:
You have a very nice page & I am so sorry for your health problems. I myself have Rheumatoid Arthritis & Fibromyalgia, Myofacial Syndrome etc...I actually do have many of the symptoms that you mention. I wonder if RA has some of the same symptoms as Sarco dosios??? {sp}. Thank you for having this page available. Sincerely JanisD