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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.

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 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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jodyvicaro | @jodyvicaro | Jul 23, 2017

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

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3 replies
irene5 Irene Estes | @irene5 | Jul 23, 2017

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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chesneydell1965 | @chesneydell1965 | Jul 24, 2017
In reply to @jodyvicaro "Can I get social security disability for sarcoidosis of lungs skin and other effected organs" + (show)
@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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chesneydell1965 | @chesneydell1965 | Jul 24, 2017
In reply to @jodyvicaro "Can I get social security disability for sarcoidosis of lungs skin and other effected organs" + (show)
@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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bboxer | @bboxer | Jul 24, 2017

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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bboxer | @bboxer | Jul 27, 2017

I'd like to know what some of the symptoms of neuro-sarcoidosis are. Can I also get an update as to how any of you neuro sarcoidosis sufferers are currently doing.

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1 reply
bboxer | @bboxer | Jul 27, 2017

Can I also get an update as to how any of you "vanilla flavor" sarcoidosis sufferers are currently doing. I'm now probably in my ~12th year and getting rather rapidly progressively worse especially living in Florida the summer heat and humidity has been absolutely brutal.

I'm currently up at our summer home in western mass to get away from the Florida summer heat/humidity for a while which I highly recommend especially for folks who live in an extraordinarily hot/humid climate.

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bboxer | @bboxer | Jul 27, 2017

Any updates Jodi that you can share?

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bboxer | @bboxer | Jul 30, 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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what do you mean by "smells and food has changed"?

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