Apparently I must have done something wrong the first time I tried to post this. So if my first try shows up for some reason later I apologize for double posting but I need help so badly I'm trying again right away.
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.