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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Nov 6 8:25am | Replies (1517)Comment receiving replies
Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.
Replies to "Hello, I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT..."
Thanks sadly I have gone to the er several times for pain because of it. They consider it gas, heart burn or something else. I know my blood pressure is not 174/114 because of it and I may have no choice as I was supposed to see a surgeon about it next week only for the head surgeon that I saw last year changed my appointment to where I have to see him now. Either way thank you, I am already preparing to see about the Mayo clinic if this does not work.
Hi, i dont know anything about your disease. But i think you should call your dr or e.r. about your black stools asap. I have heard thats not a good sign.
Glad to hear you are ready to see the Clinic. @kanaazpereia gave information on how to contact the Mayo Clinic. They are very nice and easy to deal with. Not at all like a normal clinic that has no time or patience. I highly recommend you call. Let us know how you are doing from time to time. It is normal to feel overwhelmed because you have an illness you want to ignore but can't, you are in pain and can't make it stop. You are hearing scary information. Just take one step forward at a time
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Hello @danielcamp, the story you tell is reminiscent of my experience and that of so many others . I'm sorry you have this and have to deal with those nasty symptoms. You are going to be ok, please have faith and a positive attitude if you can muster that up. My first advice is to go to a doctor or ER regarding those symptoms that you mentioned very soon and make sure nothing else is going on. Then my advice to you is a trip to the Rochester Mayo Clinic if at all possible. It is rare to find the proper diagnosis and treatment anywhere else. Dr. Darrell S. Pardi at the Clinic is the Doctor you need to see. This is a very big step to take but if you want to find some answers this is where you need to go. This is my opinion based on my experience. You have gone a long time with this and you really need to be seen by those who have researched this illness and know what they are dealing with. I never thought I would make it there because of all the obstacles. I put my mind to it with the help and advice from some good people on this site I made it. I am so glad I went. I have piece of mind. I look back and the time went very quickly and the cost for everything is the best invest I've ever made.
You may have already been seen regarding the symptoms you mentioned but if you haven't please go and get it checked. If you have good insurance an ER can do most of the test quickly without taking weeks and running all over the place.
Good luck to you and best wishes for your good health.
@vdouglas