stage 2

anyone else that has been told that they r stage 2? This sucks. the va sucks. so any doctors here in texas that deal with sarcoid? peace and love

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Don't worry about the staging - 'staging' in sarcoidosis is completely different from cancer staging.

In cancer, the disease progresses from Stage I to Stage II, etc. to stage IV, and then kapput (you die).

In sarcoidosis, staging is a kind of shorthand that radiologists (the guys that read and interpret X-rays) use to describe what they see on a chest X-ray:

Stage 0 = clear chest X-ray.
Stage I = enlarged lymph nodes, commonly the ones around the heart (hilar lymphadenopathy).
Stage II = enlarged lymph nodes + involvement of lung tissue.
Stage III = involvement of lung tissue only.
Stage IV = some degree of pulmonary fibrosis in the lung tissue (permanent lung damage).

While there is some correlation with the staging in sarcoidosis and prognosis (Stage 0 and I usually resolve spontaneously most of the time, stage IV is permanent) it means very little in terms of disease severity. It also applies ONLY to the lungs and lymph nodes in the chest. It doesn't tell anyone what might be going on elsewhere in the body - the heart or brain, for example. While it is uncommon, it's possible for someone with stage 0 to die of a heart attack due to cardiac sarcoidosis.

Symptoms can range form nothing at all, to totally debilitating, regardless of the stage. Some people, like me, have few serious symptoms (at stage II), while others with stage I can be totally unable to function.

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I started out in stage 1 progressed to stage 2 ( and I say progressed only because stage to has more involvment than stage 1) and then went on to see my lungs and lymphnodes begin to resolve in year 7 or 8. No residual damage. At about the same time as the lungs began to resolve the 'snowballs' were first seen in my eyes although I had been symptomatic from the beginning.

As J5W says, staging means very little and is no indication of the involvement of other systems.

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I am in stage 5 renal failure due to sarcoid and have stage 2 lung disease from it.

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Never thought about what stage I'm in, I have it lungs, brain , Spinal Cord......haven't had a full body scan in about three years. I live in Texas where Medical Center is and I think DR Erika Simpson is a great neurologist with Methodist. I also recommend DR Katz for the lungs, both wonderful doctors in Houston area. Hard to get am appointment but worth the wait.

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'Staging' is meaningless for extra-pulmonary sarcoidosis.

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I had to get away from the VA, too. They were telling me I was asymptomatic. I went along with it. Eventually got some pretty solid indicators that I was in a Sarc "episode". Went to the Military hospital. Got a knowledgeable PCP. Was referred to Texas IPS, Dr. Manica Isiguzo, MD. Ironically, I went to the VA and had a skin biopsy done that confirmed the Sarc. I have it in the skin and lungs.

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Docs don't seem to like to talk about prognosis, but prognosis can be determined from staging

stage 1 - remits in 60-80 per cent
stage 2 - remits in 50- 60 per cent
stage 3 - remits in fewer than 30 per cent. Significant chance of relapse. One study showed 74 per cent relapsed within one month of quitting corticosteroids for longer than one month.
stage 4- not worth mentioning, apparently. (I have seen 1-5 per cent remission claimed and that is better than zero.)

Source, bottom of page 41 :

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The prognosis stuff is nice to know, but what if you're not one of the lucky ones?

I fall into that category. I was diagnosed with asymptomatic Stage I sarcoidosis more than 20 years ago, and not only didn't it go away, it has progressed to Stage II.

Unfortunately, this is a really complicated disease, and since we really don't know how it works, any kind of prognosis is nothing more than wild guess.

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If you are stage two, you may not be the luckiest person, but you are still lucky co.mpared to the threes and fours. I was a four at diagnosis, although I still haven't heard the last on this diagnosis, but I will be reporting soon on my last CT scan for "suspected sarcoidosis," (Radiologist says the findings are consistent with s.)

I guess I just prefer a half-baked statistic to "nobody knows". They might be using that to cover up what they do know, but don't want to tell you.

I don't need a pat on the hand and "most sarc patients go into remission" line from my doctors.

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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.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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