Posted 4/24/2007 9:01 PM (GMT -6)
Welcome Christy:

It was nice to speak with you in chat this afternoon. I'm pleased that you found this forum. Like I said in the chat, my husbands friends wife has sarcoidosis. Her's is in her lungs and she's had it for several years now. She's gone through a lot of changes. If you would like I'd be willing to contact her and talk with her and see if she has any suggestions for you or maybe she'd be willing to exchange emails with you.

You'll find a lot of the ppl here understand how hard it is emtionally and physically accepting the changes that our illnesses bring about to us. If you were to ask me how I cope with mine, I don't think I could tell you exactly how I do it. I've had lupus 18 yrs and most of the time I did pretty well, with many remissions and I was able to accomplish a lot of things in my life. Now though, I've become terribly ill and my body will never ever be the same again. I've been really down on myself lately and I'm struggling a lot.

I'm so very pleased that you do not have cancer. It's so scarey when they say the "C" word and such a relief when they say you don't have it. Just so you have some history on me, last August 2006, I found out that I do have MDS a form of blood cancer, it's also know as "preleumkemia" or "smoldering leukemia" as 35-40% of patients turn into full blown leukemia. I'm having major issues dealing with the new diagnoses and honestly all the fun things that I've got to look forward to (NOT). I want to offer you any support or help that I can do. If you'd like my email or anything please let me know and I'll just be there to listen and oh I don't know, just try to help. I have such a sense of a need to help people, I mean anyone. I just want to be of help to someone, I want to do something good, be worthwhile as much as I can for as long as I'm going to be left in this world.

So please come here and let us get to know you and help you and support you. I'm glad you found us and I'll be here for you as much as I can. I'm usually in the chat daily at 1pm Eastern Standard time. Sometimes I'm a bit late. If I've not arrived by 1:30 something has happened and I can't make it.

Looking forward to hearing from you soon.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Posted 4/25/2007 10:47 AM (GMT -6)
I want to thank every one of you for such a warm welcome! I am truley touched by the offering of friendship and caring enough to ask about the condition. As you know having a chronic illness makes it difficult to get out and meet new people.
Barbara I would be greatfull if your friend could speak to me about the Sarcoidosis. She can e-mail me or I her which ever she is comfortable with.
This is NIH's definition of Sarcoidosis: 

Sarcoidosis (sar"koi-do'sis) involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas (gran"u-lo'mahs) because they look like grains of sugar or sand. They are very small and can be seen only with a microscope.

These tiny granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works. This can cause symptoms of sarcoidosis.

Sarcoidosis can occur in almost any part of your body, although it usually affects some organs more than others. It usually starts in one of two places:

  • Lungs
  • Lymph nodes, especially the lymph nodes in your chest cavity.

Sarcoidosis also often affects your:

  • Skin
  • Eyes
  • Liver.

Less often, sarcoidosis affects your:

  • Spleen
  • Brain
  • Nerves
  • Heart
  • Tear glands
  • Salivary glands
  • Bones and joints.

Rarely, sarcoidosis affects other organs, including your:

  • Thyroid gland
  • Breasts
  • Kidneys
  • Reproductive organs.

Sarcoidosis almost always occurs in more than one organ at a time.

Sarcoidosis has an active and a nonactive phase:

  • In the active phase, the granulomas form and grow. In this phase, symptoms can develop, and scar tissue can form in the organs where the granulomas occur.
  • In the nonactive phase, the inflammation goes down, and the granulomas stay the same size or shrink. But the scars may remain and cause symptoms.

The course of the disease varies greatly among people.

  • In many people, sarcoidosis is mild. The inflammation that causes the granulomas may get better on its own. The granulomas may stop growing or shrink. Symptoms may go away within a few years.
  • In some people, the inflammation remains but doesn't get worse. You may also have symptoms or flare-ups and need treatment every now and then.
  • In other people, sarcoidosis slowly gets worse over the years and can cause permanent organ damage. Although treatment can help, sarcoidosis may leave scar tissue in the lungs, skin, eyes, or other organs. The scar tissue can affect how the organs work. Treatment usually does not affect scar tissue.

Changes in sarcoidosis usually occur slowly (e.g., over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:

  • Disturbed heart rhythms
  • Arthritis in the ankles
  • Eye symptoms.

In some serious cases in which vital organs are affected, sarcoidosis can result in death.

Sarcoidosis is not a form of cancer.

There is no known way to prevent sarcoidosis.

Sarcoidosis was once thought to be an uncommon condition. It's now known to affect tens of thousands of people throughout the United States. Because many people who have sarcoidosis have no symptoms, it's hard to know how many people have the condition.

Sarcoidosis was identified in the late 1860s. Since then, scientists have developed better tests to diagnose it and made advances in treating it.

Currently I have it in my lungs, lymph nodes, skin, kidneys, adrenal glands, thyroid, hypothalmus, pituatary gland and liver. I have had to have my gallbladder removed and a complete hysterectomy before the age of 40. I also have a history of ulcers and kidney stones which they are now attributing to the disease.


Thanks again for all of your support!


DX: Sarcoidosis, Hashimoto Thyroiditis, Renal Insufficiency, Adrenal Insufficiency, Degenerative Disc Disease, Bone Spurs, Sleep Apnea, GERD, IBS, Ice Pick Migraines, Hiatal Hernia, Hypoglycemia, Arthritis
RX: Effexor, Diltiazem, Flonase, ASA, Hydrochlothiazide, Tramadol, Actonel, Prevacid, Levoxel, Tricor, Gabapentin, O2, Cortef, Lodine

Posted 4/25/2007 12:16 PM (GMT -6)
Hi Christy:

Sounds like you and I have had a lot of the same things done. I had my hysterectomy done when I was 32 yrs old, and my gallbladder out at age 23. I'll speak with my hubby tonight about his friends wife and try to get the information to you as quickly as I can. You may have to bear with me as I've been pretty sick and never know when I'm gonna have a good day.

Again, welcome and looking forward to getting to know you better.


dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Posted 4/25/2007 1:09 PM (GMT -6)
Cristy, I'm so sorry about how this disease has affected you. Thanks for sharing the information about your illness. It does sound like lupus in that it can attack just about any part and any organ in the body.

You are right that it is hard to meet people when you have a chronic illness and it's also hard to find people who really understand what it is like to live with one every day. That's the great thing about this forum - you know that you are among people who truly can relate to what you are going through.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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