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.

@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

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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@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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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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@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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@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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@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 have been labeled with disease I have it in my lungs along with a mass in my right lung and skin and fear it to be in my heart because I have a mitra valve prolapse prone to heart valve infection and possibly other organs pending further test my vision is effected as well I can’t keep employment but keep trying I’ve worked all my life for my children and I am falling behind on that my question is can I get my social security disability benefits due to this painful and life altering disease

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Can I get social security disability for sarcoidosis of lungs skin and other effected organs

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I think you can Jodi, but you need a physician’s documentation. It is a process requiring a court appearance, and an attorney. My husband has sarcoidosis in his lungs and around his heart, but a former neighbor of ours had it affect so many organ systems that he was unable to work and needed long term prednisone and counseling. It was a horribly “disabling” disease for him. We never thought about disability because my husband was near retirement, but we are certain he would have gotten it. We think our neighbor was able to get disability through his work in Groton, Ct. I am so sorry you have this disease. You will need support with this journey. Good luck to you. You will get better Jodi, but it will take time. You will probably need an anti depressant as well, and there is no shame in that!

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@jodyvicaro

Can I get social security disability for sarcoidosis of lungs skin and other effected organs

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Hi Jodi
Yes you can , we had our Nero doctor write the letter.and then my husband got it with no fight. He has sarcoidosis and nerosarcoidosis. And your right it’s a awful thing to have

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@jodyvicaro

Can I get social security disability for sarcoidosis of lungs skin and other effected organs

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My husband has skin and lung then it went to his brain is nerosarcoidosis, it effects his eyes, seizures,the whole body it’s relentless
Tammi

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HI CHELSEA. WHAT ARE SOME OF THE OTHER SYMTOMS OF YOUR HUSBAND’S NEUROSARCOIDOSIS. I’M PRETTY CERTAIN I HAVE IT. IT ALREADY HAS SPREAD TO MY EYES (10 YEARS AGO) AND SKIN IN THE LAST FEW YEARS. DOES HE EXPERIENCE SUCH THINGS AS EXTREME MOOD SWINGS AND CONFUSION AND FORGETFULNESS, IF NOT ANY OTHER THINGS?

WHAT IS MAYO TELLING YOU ABOUT NEW/ NON-TRADITIONAL TREATMENTS IF ANY?SINCE BEING DIAGNOSED () ~12 YRS AGO) TREATMENT HASN’T CHANGED. JUST TAKING THE TRADITIONAL PREDNISONE (10 MG/DAY) AND (3) DIFFERENT INHALERS. WE WERE EVEN GOING TO SHANDS AND NO CHANGES IN TREATMENT SUGGESTED EXCEPT SWITCHING FROM PREDNISONE TO METHOTREXATE

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