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Posts (15)

Apr 8, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I will keep it in mind, only that distance and cost are a non starter. I do read these post and I'm starting to see a commonality with many of MP patients. One is that MP, a rarity among auto immune disorders is also a precursor that some have noted either Lymphoma and or tumor growth that is happening after some years with MP. I'm also seeing here is that there are only a few MD's who are truly looking for and to help patients with this disease. Medications, as the condition (Auto Immune Disease) which signs and symptoms resulting in inflammation which is a response to something the body is working to repair and fix. Our disease (MP) is piggy backing off treatment for RA and other severe inflammations of the body and the medication that is prescribed to MP patients appear to have a primary link to RA etc. So, without asking for treatment over the internet, do you know of any other medications that are built to treat MP specifically or is MP just grouped into the (other type) of AI diseases. In the Northeast, it seems we treat a good share of oncology type diseases but do not focus of AI (auto immune) type diseases like the Mayo. However, after going through oncology from what of my more severe MP outbreaks, they were in the dark when it came to MP, and the fact that MP has a higher secondary affliction rate of lymphoma and tumor. But asking oncology what should my screening be because of my MP. One highly own MD with a high success rate of treating and curing lymphoma looked at me with a puzzled look saying there isn't any relation of MP and a higher rate of lymphoma or tumor cases. However, the NIH and other well known publications have even documented a higher rate of lymphoma of tumor cases. They just can't get the % down yet to anywhere from 28% to 42% higher chances.

Apr 8, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Have you heard of any other types of medications that are not in the family of NSAIDS or Steroids. I have a severe issue taking these types of drugs as I loose the ability to see. This is a rare but devastating side effect to NSAIDS and Steroids. I'm a unfortunate few who have this problem. Thank you for your time

Apr 7, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

It's been a hard time finding someone who actually knows what MP is, where do u go and what's the outlook. I'm in the same boat. To find compassion and a kind voice helps tremendously. So how do u go from point A to C? It's that (B) that's the killer, hate using that word, but when it fits. We, as your not alone in this fight to get help. We call looking for help, and we end up talking to a bridge troll. They won't lower the bridge for you to cross for that help. The talk to u as if your asking them to pay your IRS taxes. They make it sound as if where the ones with the knowledge already in hand. Then, to round it off it is our duty to address them as queen or king, that their time is governed by what they dictate. Yet, for what ever purpose there titles are receptionists or customer service providers? Go figure, our health is second to their primary needs to be pampered and never questioned, only to be told when to speak and when to be spoken to. To actually find someone with the ability and knowledge to help you is beneath their need to sit, answer, and smile and gossip for a paycheck. Never mind your needs to not suffer from a debilitating, rarely recognized disease and find that pervebal needle in the medical soup. We pay more, we get less for a government controlled Healthcare system designed to promote jobs within the system. As we feed this system, we are actually not in the system. So I can only offer one true comment that has a rarity of working, that good luck is really all we have left. 

Apr 4, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I'm in New England, we have no specialist. I don't know anyone that is, sorry. As it sounds, I'm out of luck where I live.

Mar 29, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

sorry to hear your relapse, I've had at least three since my first incident with MP, which I thought I had gall stones or the pancreas was acting up. I've had zero meds though due to my allergy to steroids and NSAIDS. My best wishes and stay tuned as I'm hoping to here more from others who suffer from MP.

Mar 29, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

prefect, when i signed up, it really I really couldn't find the how to in this group. And, yes getting hit with hundreds of posts on the entire auto immune disorders became a instant headache to say the least. Adjustment of the settings cured it before the computer was shot for treason. Thank you.

Mar 29, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away but I do need to ask a question about your Carcinoid. I've been diagnosed with MP since 2016, but and severe attacks from this since 2012. Did the doctor say where they located the carcinoid and your symptoms unless your symptoms were from MP? The reason why I'm asking is that doctors in Boston and in New Hampshire are clueless to what MP is. Most of what I've been reading is, many have had either lymphoma or tumor. So my own PCP doesn't believe in preventive care of MP and what it can lead to.

Mar 26, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Thank you, yes very upsetting that there is no compass to steer us by for MP. Scott Sent from Mail for Windows 10