sclerosing mesenteritis

[ssjane]

Just wondering if anyone has this rare disease or knows anyone who has it. My husband was diagnosed with this last week and so little is known about it that they are suggesting that he goes to the Mayo Clinic.

[Sassyclass]

Sorry I can't be of any help other than to keep your husband in my prayers. I can also say if the doctors are recommending he go to Mayo then by all means go. Mayo is one of the best clinics in the world. My mom went several years ago when no doctor could find out why she was having migraines. After months of tests she went to Mayo. It turned out to be 2 cysts the size of an egg in one of her sinuses. Now everytime she is sick and no one "knows why", my step-dad takes her to Mayo. They live in southern Indiana. What have you learned about this disease? I have never heard of it.

Cat

[savvy_sniper]

I Googled it and found this.

http://www.mayoclinic.org/sclerosing-mesenteritis/

[ssjane]

Thank you for your replies. We have done research on the internet and he has joined a yahoo group he has found. So little is known that each case is treated differently. He has two masses that are on the artery which feeds the small intestine. He also was diagnosed with young onset parkinson's disease 4 years ago at the age of 43. Thanks so much for your prayers. We cherish them.

[sjm1027]

Yes my brother was diagnosed with this about a month ago.
I here it's very rare and only 200 people have it. Not sure how to help him. He has to make some surgery decisions but we don't have enough info about it.

Steve

[frugalfranny]

This is a really old post..............haven't seen that person here "lately"..........

but I hope your brother gets the help he needs.

[ssjane]

Just found your post. I am so glad I did. My husband went to the Mayo clinic in December of 2009 to see what form of treatment he would need. He was there for a week and they did testing, but wanted to compare those tests with his earlier tests done in Indiana. They did not receive those tests and sent him home because it was close to Christmas and told him they would get back with him about a form of treatment. The first week of January, he received a call from the Mayo Clinic with apologies that they had not been able to tell him while he was there, but that the diagnosis he received in Indiana was not correct. He actually had B-cell follicular non-hodgkins lymphoma. He went through 8 chemo treatments which shrunk his tumors to an acceptable size. He will never be "cancer free" but it is very slow growing and he will be watched and when they get a certain size, hopefully 3-5 years at least, he will go through chemo again. Please get a second opinion if possible. I can let you know the Dr he went to at the Mayo Clinic in Florida if you would like.