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Has anyone ever filed for social security disability because of sclerosing mesenteritis? [...]

Posted by Mark @vmc123, Apr 23, 2014

Has anyone ever filed for social security disability because of sclerosing mesenteritis? Was diagnosed in 2010, had to leave my job of 35 years in 2012 because of this stupid disease! Any feedback would be greatly appreciated. Thanks

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2015
In reply to @lisas444 "My daughter was disabled with SM since 2008. She's now an adult and it's a nightmare..." + (show)
@lisas444

My daughter was disabled with SM since 2008. She's now an adult and it's a nightmare in the adult SSI world..her hearing is next month. Multiple bowel resections, continued aggressive growth, TPN dependent. We have 57 people in a support group if you're interested I can give it to you. Private group.

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i have my daughter's Court Decision if you need it and the other guy, the 28 year old's Order if you need it as well. When is your hearing? 🙂

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1 reply
Mark | @vmc123 | Apr 27, 2015
In reply to @lisas444 "Mark - I know your wife is in our group, but did you ever get your..." + (show)
@lisas444

Mark - I know your wife is in our group, but did you ever get your social security worked out? My daughter's was approved as a child under TEFRA and now as an adult now back at the end of September and was awarded from the stand at the 5 minute hearing. There are 3 now we're aware of with SM and/or MP that are approved for SSI/SSDI, but unfortunately one of them passed just prior to their social security being awarded. Let me know! 🙂 or your wife can on the other! lol

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Hi Lisa! <br />
Sent you an email.<br />
Mark<br />
<br />

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davidpeck | @davidpeck | Mar 19, 2021
In reply to @lisas444 "My daughter was disabled with SM since 2008. She's now an adult and it's a nightmare..." + (show)
@lisas444

My daughter was disabled with SM since 2008. She's now an adult and it's a nightmare in the adult SSI world..her hearing is next month. Multiple bowel resections, continued aggressive growth, TPN dependent. We have 57 people in a support group if you're interested I can give it to you. Private group.

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Hello Lisa,
I am SO glad to find this site! Sent to the ER in early november, found the scar tissue mass. I have been out of work for the last 4 months, many CT, PET, and Biopsies....I am currently awaiting travel to University of Michigan. All my doctors have said I have SM, but a formal diagnosis is pending. This is absolutely debilitating! I would appreciate any guidance, this has wrecked my life and so incredibly painful. Best, David

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1 reply
baz10 | @baz10 | Mar 19, 2021

Sorry, but when folks just use initials of disease, I do not know what they mean. What is SM and PM? Thanks! baz10

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davidpeck | @davidpeck | Mar 19, 2021

My posts are referring to Sclerosing Mesenteritis, or Scleroising Pannicululitis.

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ken82 | @ken82 | Mar 21, 2021

@baz10 These short acronyms can be a problem.. It like code.. 4 letter acronyms have a better chance of being correct when googling.. I resort to google but like look what I get for "PM" ....polymyositis (PM).. Systemic mastocytosis (SM) is a form of mastocytosis in which mast cells accumulate in internal tissues and organs such as the liver, spleen, bone marrow, and small intestines. See @davidpeck for what he meant in his post.. It certainly can send the incorrect message.. Ken

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dallasss7 | @dallasss7 | Jan 23, 2022
In reply to @davidpeck "Hello Lisa, I am SO glad to find this site! Sent to the ER in early..." + (show)
@davidpeck

Hello Lisa,
I am SO glad to find this site! Sent to the ER in early november, found the scar tissue mass. I have been out of work for the last 4 months, many CT, PET, and Biopsies....I am currently awaiting travel to University of Michigan. All my doctors have said I have SM, but a formal diagnosis is pending. This is absolutely debilitating! I would appreciate any guidance, this has wrecked my life and so incredibly painful. Best, David

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Hi David,
I am with you. I am so glad I found this site. I was initially diagnosed in Oct 2020. I have been very very sick, and in pain ever since. I have seen 10+ specialists, including The Mayo Clinic in Rochester. In April of 2021 I had laprascopic surgery with a biopsy of my mesentery that confirmed the diagnosis of Sclerosing Mesenteritis. I am currently apply for disability and waiting an answer while I continue work up with Mayo and OHSU (here in portland, OR). If you or anyone else has advice or help about disability insurance or anything else, i would greatly appreciate it.

in regards to your request for guidance I can tell you what I do on a day to day. I eat very small meals frequently throughout the day, and this alleviates some symptoms I have with eating. I am also on round the clock pain meds. I cant sleep well at all due to pain so I take short naps very often. I also find short small walks around our house, 10 mins or so, helpful. If I sit for too long, or walk for too long the pain gets worse. Lastly, advocate and push for yourself as much as you can. Dont let doctors tell you no. Fight with all you got, cuz no one else will fight for you as much as you can. I hope this all helps.

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dallasss7 | @dallasss7 | Jan 23, 2022
In reply to @lisas444 "i have my daughter's Court Decision if you need it and the other guy, the 28..." + (show)
@lisas444

i have my daughter's Court Decision if you need it and the other guy, the 28 year old's Order if you need it as well. When is your hearing? 🙂

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Hi Lisa,

It has been quite a number of years but are you still active on here? what is the order? I am assuming this is your court order that can be used as evidence to help others get SSI? Do I have that right?

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