Does sarcoidosis spread or what??

I am 33 years old and recently diagnosised with sarcoidosis in the lymph nodes of my lungs, even though the dr says it hasn't affected my lungs and the shortness of breath and pain is from the swelling. I am going to see an ophthamologist, but he said I don't need to worry about this going to my heart, brain, bones, etc. I've read alot of postings where it has for people. I know that I need to keep a close eye on my skin and joints and any other symptoms. I guess what I'm asking is...is it common for this to spread? Do I start lining up the specialists? I am going to go for a second opinion. Let me know what you guys think. The pulmonogist seems knowledgeable, but I still want more input. Looking foward to talking to you all. Thanks, Dawn

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I was diagnosed 2 years ago with sarcoidosis in the lymph nodes between my lungs and few nodes in the lung. I was told by my specialist (pulmonary) that it was in remission and to live my life it would just disappear. Last Febuary he told me not to come back for one year. I started really getting sick and in June go a whole lot worse. Finally decided to go to Dallas to specialist on this web site, Found out I now have neurosarcoidosis, and if I had been treated to begin with this could have been avoided. It is VERY important you find someone who knows this disease for sure. I only hope that the damage done is not too bad. Am still being tested and had heart MRI and heart monitor. The specialist in Dallas said anyone diagnosed with sarcoidosis should have a MRI of the heart and he could not believe I had not had one. I thought the original pulmonologist was knowledgable, and he said all the things I wanted to hear except it was not true. We should all be responsible and listen to our bodies when we know something is not right instead of listening to someone else.

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Thank you, I was kind of thinking the very exact thing. Getting everything checked out right away so their is a baseline. And being a nurse sometimes works for me and sometimes, against me. I know I am the only one who knows my body the best and I agree with that. Thanks again.

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Your welcome and good luck on your journey.

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By all means, go for a second opinion. When I was first diagnosed, it was found in the bone in my mouth. I did not know I had sarcoidosis. I was then found to have it in my lungs. Who knows how long I had this disease. I was lucky and found a good pulmonologist who sent me to see an ear, nose & throat specialist (since it seems to affect the lungs/sinuses/mucus membrane areas quite a bit) and an opthalmologist. I had several CT scans to make sure it hadn't spread to other areas. So far, it hasn't affected my skin, but if it does, I already have a dermatologist that said he was knowledgeable about the disease. So, you probably will have to see several doctors since this disease can affect any organ of the body. I've learned not to dismiss minor discomforts because with this disease the damage occurs when you don't treat the inflammation. I have seen an orthopedic specialist & a rhumatologist since being diagnosed that were just awful and I'll never go back to those doctors. You can get some good ones & some bad ones. The tough part is figuring out which is which!

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Hi Shadow,

This can spread. I have been sick for 35 yrs, I know I've had this for some 15 yrs and was just dx'd.

I have it in lungs, skin and bone and just had a bad ct scan of the jaw and throat so a storm is brewing. I will find out more either tomorrow or Tues. I see an Immunologist tomorrow and an ENT Tues. And you need a special eye dr that knows about Sarc for regular check-ups.

Sorry and good luck
Gone Natural

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Yes is does spead. This started in my lungs in 1993 with many flare ups to date. 2006 in was discovered that it is now in my bone marrow in spine and in the bone. Someday there will be a cure.

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Thanks for the info. I thought that it would. Hope things are going good for you. ttyl. Dawn

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You are wise to seek another opinion when you feel you are not being taken care of. I was diagnosed by a Dr. at a small clinic. He meant well, but didn't know what to do with me after dx. He said the same as yours, that most times it goes into remission and he would ask me what I was doing when I came in to see him for issues. I am now being treated at NorthWestern Memorial in Chicago. They have many patients with sarcoidosis. I've seen an ophthalmologist, pulmonologist, ENT, gastroenterologist, neurologist. My primary is little more than a traffic director, but I suppose that is what they do now. I have a repeat echocardiogram soon and recheck with Ophthalmolgoist for vision change. Good luck to you. Go to the largest and best know university hospital you can find in your area.

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11-09
I had a biopsy on my arm in August 08 and the report was Sarcoidosis.
I had a biopsy of lung tissue on October 08 and report said all was okay.
I had a lung lavage in October 08 and the T4/T8 ratio was off so the pulmonologist said that something was off but not specifically pointing to sarcoidosis. The pulmonologist has me returning every 3 months for a breathing test because my lung function is slowly going down. The pulmonologist said there were no scans that would show helpful info.....hm...so they just don't know....Does this happen to a lot of people?

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Since they know you have it, you should insist on further tests.

The Doctor that diagnosed me (i was lucky -- walked into a pulmonary specialist and he knew what to do).

Ran these tests:
xray of lungs
CT scan of lungs
PET scan of entire body
Bone density scan
Ultrasound heart
Ultrasound thyroid

Breath test -- FEV way below normal but oxygen levels ok.

Then took pictures of my lungs with a bronc scope.

Then he sent me to a chest surgeon for a biopsy.

Complete blood tests -- the usual and then autoimmune tests.

My blood pressure had always been normal but not at the time I walked into his office so I am on Diovan.

Blood tests - the usual and then the autoimmune stuff.
the IGs and every test in the world to eliminate lymphoma, tb, valley fever, hunta virus etc etc

For the lung problems I took prednisone 40 for months. Also prescribed Advair and Spirva which I take without fail. I have stopped wheezing and can run on a treadmill again but it took 2 years.

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Shadowtoonces,

I certainly would never suggest not getting a second opinion but there are a few facts about the disease that you (and some of your fellow posters) might want to think about.

First, Sarcoidosis is a systemic disease. I think that those of us with it talk about it in two ways, one being where the granulomas show up and the other being if it is present. The truth is it affects us everywhere regardless of where the pesky granulomas occur. That said, it is obviously much better to have granulomas in some places rather than others... say the heart or the central nervous system... but that brings me to the second point....

There is no cure. When new lesions are found in new places like the brain, spinal cord or heart we really have no way of knowing how long they've been there unless there was a "clean" study done sometime in the past. Treatment itself is not a cure of any sort but is really only to keep symptoms at bay while awaiting the hoped for spontaneous remission.

Sarcoidosis does seem to show some favoritism for certain organs, but it does not appear to be elitist about it and there are cases of it showing up pretty much anywhere you can imagine. Does this mean everyone should get annual PET scans of the heart? Probably not. Truthfully, vigilance is the key and watching for new symptoms and having a doctor that you can trust is the best any of us can realistically hope for. In most cases that is more than enough. My suggestion has always been to have a lead doc and that will usually be a pulmonologist and an ophthalmologist for annual eye checks (not for glasses but for disease effects). Beyond that I would only suggest additional specialists if needed for specific work-ups, concerns or diagnoses.

Now, some encouraging statistics. You had a very limited time with symptoms and a very rapid diagnosis that is biopsy proven (so pretty solid diagnosis there). You are solidly in the young category and have most of the hallmarks of someone that should go into remission within 18 months as will happen in more than 70% of cases. Most of those will never have a recurrence of active disease. Even though you were lucky enough to make the "rare diseases" dance card, the odds are still in your favor. I hope those odds play out well for you.

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Thank you guys, you have been great. I so look foward to keeping in touch and and walking this journey (If that's what I'm calling it today... with all of you. Knowledge is power and we can all use prayers, stories and laughter. Thanks to you all.......Dawn

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mmason1707,

What city are you in I want to see your doctorm mines sucked?

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He practices in a very small town in North Carolina -- Brasstown North Carolina.

After he was 99 % sure it was Sarc he sent me to Emory University Medical in in Atlanta and they said there was not anymore they could do for me that he was not already doing.

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Paradox

I don't believe in spontaneous remission. I had conventional treatment for 14 years and during that time I was told 5 times that I was in remission. 5 times they were wrong. Most doctors don't know what causes Sarcoidosis and so they have no reliable way of determining if it is still active or not. Some doctors depend on the ACE level but I notice that they are now realising that it is not a reliable indicator. Some rely on presenting symptons but this is not reliable because the symptons return months after they have been signed off.

In the recent Access study not a single case of remission was reported from over 600 patients over 6 years.

It would interesting to do a survey on this board to find out how many people were told they were in remission but latter relapsed.

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I have neurosarcoidosis which causes paralysis in the nerves affected. Because of this it is very obvious when I am having a flareup. Whenever they decrease my prednisone below 11 mg every other day, the right side of my face becomes paralyzed (like a stroke), as does my throat and the balance in my right ear. It seems to me that I can't be in remission if the medication levels seem to determine symptoms. My symptoms are being controlled, not the disease, so I have to agree with Trevor. A full remission would imply we could throw the pills away and still be OK. Right?

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Gracious and good morning to all. I too have Sarc in my lungs that seems to be in remission for almost 10 years. The problem with Sarc is that it is like Lupus. It goes and hides and shows up somewhere else. It seems to never really go in to remission. I had a serious accident this summer and the sarc that was painfully affecting my hands so much so that I had trouble using a computer mouse because of the sensitivity. After the accident the sensitivity in my hands went away (thank the lord) but it re-emerged in my skin on my face near my eyes. I am seeing both an Ophthamologist and a Dermatologist this week to see what can be done. The morale to this story is, Sarc does not "go away on its own" it just moves to another part of my already health torn body. Most days are tolerable, but some as you all know, are most intolerable. Keep seeking Sarc specialists only they know how to keep it at bay!

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a little about the word remission, and maybe to clear up the discussion - here's a definition from online dictionary:

"a. Abatement or subsiding of the symptoms of a disease.
b. The period during which the symptoms of a disease abate or subside."

so everyone here can be correct - for a fairly large proportion of patients, there is a complete remission - a period when symptoms disappear (which does not mean that the disease is gone - that would be "cure").

most people who participate in this forum are those for whom the symptoms did not go away, or came back, so most of us apparently belong to the minority of patients w/ sarcoidosis - paradox is correct. my hunch is that a great number of the people who have remission may eventually show symptoms again, possibly in a different organ. i don't have any great statistics to support my hunch.

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Thank you singernomore for pointing out the definition of remission. I would just like to add one little extra - there is no time frames put on remission. Some people can go into remission for a couple of months, some for a couple of years, and some permanently (lucky ones). So it's quite possible that Trevor has been in remission 5 times in 14 years and relapsed 5 times in the same period. I know I've been in remission twice in almost 8 years (and would love to be there again).

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Hi Trek50

When you have flares where the right side of your face and your throat become paralysed, does this affect your voice...can you talk? Does your hearing in your right ear get affected when this happens? What tests led to your diagnosis of neurosarcoidosis?

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

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