Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

@aland

@kimh I will. Different network doctor and my electronic records don't transfer…UGH

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I honestly understand your frustration. To be honest, at least I have pain medication to fall back on. I can't imagine what a pain management clinic could teach you and that's why I am curious to find out!

@musicflowers4u

Please send a one-page letter about the tests you have had and what doctors have and have not done for you and request an appointment preferably at Gastro Dept., Mayo Clinic, Rochester, MN, Attn Drs Alexander or Pardi. Google for their phone and Fax

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I have heard great things about Dr. Pardi, but I'm not sure what else he can do for me since there doesn't seem to be any new research out there. If things don't improve, I am considering trying the Mayo Clinic but this is a tough decision as I am coming from Canada and am unsure if any medical expenses would be covered in the States. I know we don't have much life without our health, but I don't want to bankrupt my family for treatment that isn't any different from what I am currently doing.

@kimh

I honestly understand your frustration. To be honest, at least I have pain medication to fall back on. I can't imagine what a pain management clinic could teach you and that's why I am curious to find out!

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Hi @kimh, there is some information on Mayo Clinic's website here that might give you a little idea of how it may help:

Mayo Clinic Pain Rehabilitation Center
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center

@steve_b

@aland Our symptoms and test results are very similar. Mine is completely left sided. My long time GI doc got so frustrated a few years ago that he said he will only see me once a year for a check up. There are only two GI practices in town with about 40 docs total and no one else would see me saying I was receiving adequate care. Eventually it was found that they have an agreement not to "poach" each others patients. After a few years of complaints to various officials they allowed me to see a new foreign doc who just graduated from a school in the Bahamas. There is a huge shortage of docs in the state. This doc was resentful of taking me on and didn't treat me well which is I hear common in his country. This year I found a semi-retired rural GI doc who has been supportive but has no experience treating anything like MP. I went to a pain clinic last week and was only allowed to see a nurse practitioner, apparently you only see the doctor for major procedures. They offer opioids on a very strict program which I'm trying to avoid. Otherwise they offered a celiac plexus nerve block which I am considering but there can be substantial side effects and without being able to discuss it with the doctor before the procedure I'm reluctant at this time.

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Hi @steve_b. May I ask what celiac plexus nerve block actually is? For pain, I am currently on Targin (I'm from Canada, so our medication names may be different than in the States) which is a mild slow release oxycodone (that does not cause constipation) and the typical oxycodone for breakthrough pain. The oxycodone knocks me out and I would like to learn more about celiac plexus nerve block and if it could be an option for me.

@kimh

I have heard great things about Dr. Pardi, but I'm not sure what else he can do for me since there doesn't seem to be any new research out there. If things don't improve, I am considering trying the Mayo Clinic but this is a tough decision as I am coming from Canada and am unsure if any medical expenses would be covered in the States. I know we don't have much life without our health, but I don't want to bankrupt my family for treatment that isn't any different from what I am currently doing.

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@kimh, you might want to just give Mayo Clinic a call. I'm sure they can answer most if not all of any questions you might have.

Here is information about Mayo Clinic's Billing and Insurance
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance

Which includes information about Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

Hope this helps…
John

@johnbishop

Hi @kimh, there is some information on Mayo Clinic's website here that might give you a little idea of how it may help:

Mayo Clinic Pain Rehabilitation Center
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center

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Thank-you @johnbishop. As I said, if things don't improve by January, I will probably be coming down to Rochester. I'm trying to wait it out here and really my only reason at this point (since my doctor seemed a little more attentive before) is economics. Sad, eh?

Thank-you John. I really need to get this bout under control. I have been off work since August 2017 without ever reaching remission. Even before this latest relapse, I was still on Targin for pain (but only two pills daily at most and sporadic days without any pain medication), but at least I had some semblance of a life.

@kimh

Thank-you @johnbishop. As I said, if things don't improve by January, I will probably be coming down to Rochester. I'm trying to wait it out here and really my only reason at this point (since my doctor seemed a little more attentive before) is economics. Sad, eh?

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I hope you find some answers and help. In case you have to come to Rochester Mayo Clinic Campus here is some info that may help you get around. Nice thing about Rochester in the Winter is you can get to all the buildings without going outside.

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Mayo Building – Mayo Clinic Patient Video Guide – Minnesota – YouTube

Thanks! And I appreciate that everything can be found indoors! I do know a little something about Minnesota winters lol!!!!

@kimh

Thanks! And I appreciate that everything can be found indoors! I do know a little something about Minnesota winters lol!!!!

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Hi Kimh -I may have missed some of your past posts -forgive me if I’m old news. I’m wondering if you have been able to find some triggers or are on a diet of some kind? I’m in Canada and have little to no medical help. I finally have this body fairly manageable -but after many years!

Hi @pcfromfm
Hahaha, you are not old news!! I check the Mayo posts daily, but once I started to feel a little better, my contributions became less and less. Human nature!!! Anyway, my GI is slowly weaning me off prednisone (because I have been on them since August 2017), but this weaning down had currently sent me into a relapse. He is probably the top GI in my city, but I think even he is getting frustrated! I am currently still on a very low dose of prednisone and tamoxifen as well, but I think he may start looking into immunosuppressant medication which seems a little scary to me. I honestly don't know what else to try. I have heard about thalidomide, but it is apparently very difficult to get here. At the moment, he hasn't given me any direction so I am on pain medication and trying not to sink too low into depression. I haven't found any diet triggers, but because of my hypothyroidism, I am already on an extremely low carb diet. I have also been cutting out foods like eggplant which I read are inflammatory. I actually find that physical activity is the biggest contributor to my pain. I've had to give up yoga, which was so healing to me in other ways.

Hi @kimh have you tried diets. I basically couldn't walk until I started the Paleo Autoimnune protocol diet, with supplements suggested by Chris Kresser. I found that being on a very strict diet for 6 weeks allowed me to introduce foods later on. Whenever I feel like I am getting symptoms I stop cheating. I have been able to manage this with probiotics, supplements, and prebiotics. In a nut shell, I take VSL #3 for a priobiotic (2 times a day), Now enzymes (after each meal when symptomatic and twice a day when not), GI-Revive (after meals when symptomatic and twice a day when not), grapefruit seed extract, ginger extract, and feverfew for pain. With my diet and these supplements I have been in remission for 5 years with a few small relapses. I also don't take any medicine for gerd anymore after 11 years of antiacids and other meds. I am not a doctor, but wanted to share what worked for me. I follow functional medicine doctors, Dr Hyman and Dr. Kresser. Good luck.

Thank-you @doron for sharing in your success. I had gone to a naturopath and she had prescribed me some digestion (with enzymes) supplements without much success. However, I have not tried grapefruit seed extract, ginger extract or feverfew for pain, so at least I have something new to try! I will also look up the two doctors that you mentioned…

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

@kimh

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

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I have done an elimination diet a number of times and recommend it strongly. I know some think since we are not dealing with intentional issues such as Crohn’s -food should not matter. I believe and know through experience that there are foods-maybe chemicals-that I can not manage. Flarups happen immediately. Stress of any kind, good or not, and not enough rest cause a relapse. I have come off prednesone completely right now and use drugs only intermittently – more to help ward off an episode. I do take B12 and B6. Quality of life is so important – I have found -step by step -taking control with food and life style -I can manage much better. One step at a time!

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