Hello again @kimh , so sorry that it took so long to respond to you. I live on the west coast and work during the day. At work I can sometimes read the comments but it's very difficult to respond so I wait until I get home from work. I am so glad to see the response you received from so many members, moderators and mentors: @kanaazpereira , @pcfromfm , @jolied , @bertbiz , @poppy73 and my apologies for any that I overlooked.

Thank you for sharing your history and concerns with us. As you can see everyone understands what you are going through and are anxious to help in any way that we can. Your story and symptoms are unique to you but sound so familiar to us. Sorry you are dealing with the pain and other discomforts of this illness. I hope it subsides and you begin to feel better soon.

You are right about this being a lonely illness until you interact with a group like this, it's then that you begin to feel understood.

I personally have not heard of any new treatments other than what @kanaazpereira mentioned in her response. I would certainly ask your doctor about that, it sounds very interesting and promising. Prednisone is the conservative approach, if there is one, and should be prescribed based upon the severity of your symptoms and diagnostic evaluations.

I see you have made a lot of contacts and have received a lot of information. Since you are now a member of our community we invite you to continue to come back and respond in the same manner. Please let us know if you need more information and we certainly would like to hear how your appointment goes with your G.I.

I'm also attaching information that was deemed accurate up to this year from some of the leading doctors in the field. I hope it is can provide some information that is helpful to you.
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161
Best wishes,
Von @vdouglas

@kimh I copied the link @kanaazpereira had already sent you, this is the one I wanted you to see if you haven't already, http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

Hello @jolied , Welcome to the Mayo Clinic Connect. Thank you for sharing your story with us. It sounds like you are very much in control of your care and treatment and it has moved along somewhat quickly and smoothly to some degree. Prednisone and Tomoxifen are wonder drugs but do have some down side.
I'm sorry you are dealing with the pain and tiredness. I suggest that my doctor monitor my C-reactive protein. I'm diabetic so I get blood test every 3 months, this allows me to monitor to some degree the amount of inflammation going on inside me. I make a note on my test results how I have been feeling for reference if things were to change and I have my A1-C to compare also.
I sent this to @kimh but it would be great if everyone would save a copy of it. I especially like the diagnostic/treatment flow chart.
http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf
I hope and pray you feel better,
Von @vdouglas

Thank-you Von! I am going to print it out to go over it with a fine tooth comb! ( a little old school, I know!) I am so glad to have joined this group!

Thanks for your post I felt so much better after reading it! I have MP and it is a daily struggle!