Discussions By Condition: Medical Stories

Sclerosing Mesenteritis - Getting worse need ideas

Posted In: Medical Stories 4 Replies
  • Posted By: Mikep480
  • March 7, 2008
  • 05:10 AM

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.

Mike

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4 Replies:

  • Mike,I'm a 38 yr old male, recently diagnosed with sclerosing panniculitis, another name for/kind of sclerosing mesenteritis. I am still in the midst of further testing (laparoscopic biopses, etc.) to determine the extent and to make sure the huge mesenteric mass is benign. I came across your post while trying to find information on the cause and whether this can be contagious to my family. Do you happen to know what may have caused your SM? From what I've read online, the cause is usually never found in most cases. Although, a link with prior abdominal surgeries is mentioned here (http://www.mayoclinic.org/sclerosing-mesenteritis/)... I have never had any myself.Your condition seems to be worse than mine at the moment. My thoughts are with you. I hope you don't mind me asking... how long has it been since you were diagnosed? How has it progressed?As far as treatment, I've been told and read here (http://www.surgicalroundsonline.com/issues/articles/2007-10_04.asp) that corticosteroids, immunosuppressants, or progesterone can slow inflammation and progression. I have not started anything yet... again, until "final" diagnosis is determined. Have you had any success with this? What else have you and your dr. tried?Any information you have would be helpful. Thanks for posting and I wish you all the best.
    Anonymous 42789 Replies Flag this Response
  • My brother-in-law was just diagnosed. He did not find out until he had a bowel obstruction, couldn't eat or drink. It is good that you are getting help while you can still do these things. He is doomed to a life of intravenous feedings and is looking at a bowel, stomach, and liver transplant because it has spread so much. Stay on your medication and look for other options. Be thankful for life. There are those who have this who are much worse off. You got help early and I pray that it will cause you to heal. Sad in Maryland
    Anonymous 42789 Replies Flag this Response
  • i am74 years old and have,been battling this disease for several years. mine is inoperable, but iam still abe to survive on liquids. being mostly on liquid by self treatment has helped me to survive the past few years. keep holding on. i hope you get better, my prayers are with you robert. 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. Mike
    Anonymous 42789 Replies Flag this Response
  • 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. MikeHi Mike,I did a little reading on this situation. I have no idea how it comes about. However, lack of mb12 and methylfolate can cause all sorts of cellular reproduction malfunctions. You might go and read the active b12 basics > http://forums.wrongdiagnosis.com/showthread.php?t=62327 and see how your other symptoms line up with the symptoms list and what ones don't.
    Freddd 3576 Replies Flag this Response
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