SARCOIDOSIS

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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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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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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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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Any updates Jodi that you can share?

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@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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@bboxer

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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I’ve had sarcoidosis since 2011. I am almost 65 years old. Mine has never spread to my lungs. However, CT has shown moderate amount in my chest. It feels as thought my chest cavity becomes squeezes. I have been to pulmonologist, internal med, rheumatologist, neurologist. Even made a trip to Rochester Mayo. I’ve had biopsy of node, mediastinoscopy with the thinking of Lymphoma. So far no mess work. Prednisone, methotrexate, Humira and Imnuran. About 4 years ago I woke up one morning deaf in my left ear. Seems to be nerve related. Two years ago I deleloped steroid induced glaucoma. I now have no vision in right eye and left is slowly declining. From that I can not take any steroids. Never had a spinal tap, don’t know why. I have no energy, hot and cold, unstable on my feet. Also have Type 2 diabetes and neuropathy in legs. Take 2 pain pills and 4 Excedrin a day to get by. Read a little on a Nook or a tablet. Water my flowers and sit around a lot with a fleece throw year round. Started disability 2 years ago. No problem. No lawyer. On Medicare now. Have gone from 215 to 175 in this process without trying. Live in South so it can get hot/humid. Went to beach with family ( I can’t drive) a month ago. Just sat in condo babysitting six month old.
All in all not a fun way to live and worsening. Get up at 7 hurting. Take Lotitab have coffee. Read tablet. By 9:00 back in bed till noon. Eat a lite lunch, take Excedrin and back to bed. Up about 3 shower/shave. Take another Loritab. Help wife a little with dinner.
Then water plants outside and take dog on a very short walk when I feel like it. Back in, bet PJs on and go to bed 8:30 with 2 Excedrin. May read some evenings.
Also forgot I get 12 eye drops a day for my eyes. Expensive little bottles!! That’s about it. Any ideas?

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Hi Ricky S, thanks for sharing your ALL TOO FAMILIAR experiences. At times I thought you were talking about me! I am gonna turn 64 in 3 weeks (god willing). I too live in the South (Florida, Brevard Cty). Was diagnosed ~10 yrs ago and it wasn’t too hard getting SSI ability primarily because at the time I was a good candidate for a lung transplant. It started in my lungs and has been getting progressively worse and worse over the years. I describe the pain as like being tackled by the entire Dallas Cowboys (boo) defense. Heat and humidity is absolutely murderous on my lungs. I more or less have to hibernate in the summer when we’re not up in New England. Thank goodness we were able to purchase a summer home up in Western Mass several years ago (Berkshire Mountains) where I met my wife to get away from heat for a while. Just got back, was a great break, it was very cool in the morning. How cool was it you ask?!; So cool had to start a fire in the fireplace every morning to take the chill out of the air. Gonna return hopeful;ly in a few weeks after getting more Dr appointments out of the way. My prostate cancer appears to be spreading but don’t believe it’s related to the sarcoid. May have to start radiation treatment but that’s no big deal either.

I’ve found hydrocodone a very very effective pain reliever but am anxiously awaiting my medical marajuana card (non-smokeable and without THC type) to see how effective it might be for pain management and to get off script pain meds. I’ll keep you posted if interested.

No hearing problems thus far but have been legally blind in right eye for some time now left one still good knock on wood. Only other complications have been minor joint pain and skin problems no big deal. Am in the process of making another appointment with Mayo in Jacksonville to see if it’s starting spread to my brain. (nuerosarcoidosis). Pretty sure it has. Do you know anything about nuerosarcoid?

Thanks for the info about steroid induced glaucoma. I’m gonna talk to my pulmonologist about it at my upcoming appointment with him. I sure hope ocan stay on it.

p.s. hang in there a please stay in touch.

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@jodyvicaro

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

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Sorry if I already asked you this Tammi, but, what were his symptoms, how was he diagnosed (spinal tap?), and how is his neurosarcoid being treated currently?

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@bboxer Just wanted to let you know, as others have too, that you aren’t alone. I was diagnosed with sarcoidosis about 32 yrs ago, in my 30’s.
I understand it can effect different areas of the body, for me it’s my lungs, back, and I have other issues but not sure if related. Tests show that I don’t have anything active at this time. But through the years when I have felt the symptoms coming on it has usually been when I am under more stress than usual, so I try to stay away from stressful situations that I feel may bring on an episode. I hope that you can get some relief for your symptoms, especially your rib cage pain, I too have that fairly often and know that it can be very painful and debilitating at times. I’m currently taking an anti-inflammatory medication and that is helping. I do a lot of coloring, writing, mindfulness activities, and breathing exercises to deal with my anxiety and those things help me with the stress and help me through the rough times. Take care and I hope you get some relief soon.

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Hi, I was diagnosed 14 years ago. Lungs, parotid glands. I couldn’t walk and could barely feed myself. Along with steroids, and other medications I can no longer remember, I began a green tea and lemon regiment. Not recommending this —I ceased all medication I was prescribed. I continued the green tea and lemon regiment. To my doctors’ surprise, my lungs were like a new born baby’s, after receipt of my lung X-ray. Other test confirmed. I was in remission. No evidence in 11 years of sarcoid in my body. Begin the green tea, lemon and honey regiment. The regiment will begin attacking the nodules. You will begin feeling better.

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