1. < Lung Health

Pulmonary Sarcoidosis: How are you dealing with it?

Posted by bboxer @bboxer, Dec 25, 2016

I'm very interested in creating a discussion group with other patients being treated for pulmonary sarcoidosis and how they're dealing with it. I was diagnosed ~ 10 yrs ago and it is unfortunately gradually getting progressively worse spreading from my lungs to other parts of my body. I'm mainly interested in what others have received for a prognosis and most of all how they handle the, at times, somewhat debilitating pain (primarily rib cage) that goes along with it.

Interested in more discussions like this? Go to the Lung Health Support Group.

chesneydell1965 | @chesneydell1965 | May 2, 2017
In reply to @ryman "The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my..." + (show)
@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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I pray for you that you don't have neurosarcoidosis it kills me watching my husband .

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Lizwood | @lizwood49 | May 13, 2017

I am 48 , I found out that I had sarcoidosis in 2006 it was pretty bad , but as years went by my doctor could no longer see sarcoidosis from my x-ray as if I never had it but my pain today says other wise I decided to see another doctor just to make sure nothing has gotten missed wish me luck

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 13, 2017

Hello @lizwood49,

Welcome to Connect. We're so glad you decided to join us, and to seek a second opinion as well; we have to be our own advocates, especially in matters of health.
Do you have any questions about your upcoming appointment? Let us know; we're listening.

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clay1969 | @clay1969 | May 21, 2017
In reply to @clay1969 "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..." + (show)
@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it's like, not even my family.
All Alone,
Karen

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I would love you to write. My family and daughter aren't there for me. Especially my 27 yo daughter. She has enough problems of her own. Please contact me here or by private message.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 21, 2017
In reply to @clay1969 "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..." + (show)
@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it's like, not even my family.
All Alone,
Karen

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Hi @clay1969,
You'll notice that I removed your personal address from this public forum. According to our Community Guidelines, we recommend not sharing personal contact information publicly. https://connect.mayoclinic.org/community-guidelines/

You may wish to use the private message function.

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clay1969 | @clay1969 | May 21, 2017
In reply to @clay1969 "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..." + (show)
@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it's like, not even my family.
All Alone,
Karen

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Ty. I didn't know that about the address.  I call myself reading most of it.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 24, 2017

@clay1969, how did your appointment with the pulmonologist go on May 3rd? What did you learn? What are the next steps?

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jodyvicaro | @jodyvicaro | Jul 23, 2017

My name Is Jody vicaro I recently was told by my doctor I have sarcoidosis of the lungs and skin and will need further testing to confirm other organs

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jodyvicaro | @jodyvicaro | Jul 23, 2017
In reply to @clay1969 "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..." + (show)
@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it's like, not even my family.
All Alone,
Karen

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My name is Jody vicaro I have been plaqued with this disease I have it in my lungs along with a mass in my right lung and skin and getting check for other organs I very nervous to it being found in my heart I also have high blood pressure and mitravalve prolapse and very prone to heart valve infection don't know very much about the diseases but want to know more it has been terrible to say the least is very painful and debilitating

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jodyvicaro | @jodyvicaro | Jul 23, 2017
In reply to @clay1969 "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..." + (show)
@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it's like, not even my family.
All Alone,
Karen

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I'm still trying to stay employed for my kids sake but fear for all the time having to miss work and not being able to keep employment due to the disease if social security benefits would be a better option my question is can I get disability benefits for this terrible disease

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