Discussions By Condition: Medical Stories

Diagnosis of Sclerosing Mesenteritis - Treatments Failing need help =[

Posted In: Medical Stories 2 Replies
  • Posted By: Mikep480
  • March 7, 2008
  • 03:58 AM

Hello, my name is Mike, I'm 28, and I'm slowly dying from an illness called Sclerosing Mesenteritis.

It's extremely rare (~350 cases reported worldwide total) and in my case at least, very debilitating. I suffer from a lot of pain, fatigue, weakness, and more recently loss of all interest in eating and nausea/occasional vomitting when I do force some food down.

There are 0 posts anywhere in this forum or in ANY medical forum that I can find on the internet. The standard treatment, which is the only treatment, that all the specialists, surgeons, GI Docs et al, have come up with, has done nothing for me. I'm getting worse and am now confined to bed most of the time. The Mayo Clinic is the only hospital in the US that I can find that has any information on my diagnosis, and at this time is not willing to treat me because they will not accept my insurance, and I cannot afford it out of pocket because the government is denying me dissability (official reason I was denied for Social Security Disability is that my arms and legs still work).

I am DESPERATE to speak to anyone who has HAD SM (Sclerosing Mesenteritis), KNOWS someone who has had SM, or has ANY KNOWLEDGE on this disease. Desperate. Please, even if you feel you know too little to be of any help, as long as you know SOMETHING, please respond to my thread. It just might save my life.

The irony of this situation is I've spent the last 10 years working on an ambulance being the person that strangers relied on to save their life. Now, I am relying on all of you strangers to try and save mine.

I would be happy to answer any questions for clarification or out of interest or if someone needs help with their own or a loved one's diagnosis of SM. I have done tons of research but there's not much material to paw through. Help save a stranger's life. Respond to me today! Thank you all so much for your time.


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2 Replies:

  • Blaze, thanks so much for the advise. I don't get on the computer very often these days so it took a while for me to log in and see your reply. I actually am no longer taking the steroids and very recently stopped the Tamoxifen. I got a response from the head of the GI department at the Mayo Clinic branch in MN who had some very helpful information on other treatment plans to carry out with my local Doctors here so my case is looking up and not quite so grim anymore, now that I have some ideas from a Doctor who has actually treated patients with my diagnosis before. I'm going to take your dietary advise as you seem very knowledgeable and well respected on Wrong Diagnosis forums. Thanks so much again!Mike
    Mikep480 2 Replies Flag this Response
  • Hi Mike!I'm sorry to hear about your illness. I don't have sclerosing mesenteritis, but i also have something rare... One way you can look up information on your disease is by going to the Pub Med site, which is where all the medical literature is listed. If you type in "sclerosing mesenteritis", 194 journal article listings show up. It looks like there was a large study done on your illness at Mayo. There are likely other helpful papers in there too (some of them are not very helpful, however, so beware).Other sites you might try are the ones for rare diseases, such as NORD or the rare disease database through the NIH.By the way, to get to pub med, just google it and follow the link.Best Wishes.
    Anonymous 42789 Replies Flag this Response
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