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Mar 6, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@gabrield, yes very common because they don't understand the disease. If you are having symptoms, or not having symptoms, you may want to see a specialist who understands the progression of this disease. Even if it is just for peace of mind knowing what organs, if any, are affected. The Mayo Clinic Gastroenterology Department in Rochester Mn. is well versed in evaluating the disease. Once again, there is no cure, but there is treatment or no treatment at all required if your symptoms are manageable and the disease is not progressing.
I hope you are doing well and best wishes to you. Are you managing alright?
@vdouglas
(Von)

Mar 2, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @gabrield , That is a very good question and one that is not easily explained. SM and SP seem to be used universally and I’m not sure if there is any difference at all in recent terminology. I have read that there are three stages to the disease, and having the first doesn't necessarily mean you will progress to the third stage. Documentation to support this can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

There is some additional information that could explain the difference between the two. Here is an excerpt of that information: "It can be categorized according to three pathological changes: chronic nonspecific inflammation, fat necrosis and fibrosis[2]. This varied terminology has caused considerable confusion, but the condition can now be evaluated as a single disease with two pathological subgroups. If inflammation and fat necrosis predominate over fibrosis, the condition is known as MESENTERIC PANNICULITIS, and when fibrosis and retraction predominate, the result is RETRACTILE MESENTERITIS. The overall presence of some degree of fibrosis makes the pathological term SCLOROSING MESENTERITIS more accurate in most cases[3]". You can find that information here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

I hope you are doing well, does this information help?

@vdouglas
(Von)

Mar 2, 2018 · Congestive Heart Failure in young people in Heart & Blood Health

Hello @bangel , I would like to welcome you to the Connect along with the other members and moderators who have done so. I have mitral valve prolapse with heart rhythm issues. My worst symptoms were fast heart rate, or tachycardia, along with PVC's, which feel like skipped beats. Occasionally I would experience Multifocal PVC's which are difficult to describe. All of this was very alarming and extremely depressing. Hospitalization and ER admissions were all too familiar.

I had to rely on my higher power to get me through it. I didn't think it would be possible for my condition to get any better and in my despair I became very aware of that which was truly important in life. I acquiesced putting my life into the hands of that higher power, when I did that I felt peace and calm come over me. That was about 38 years ago. Medications along with some lifestyle changes have improved my condition but I still have many challenging medical issues which are part of my life.

All of my medical conditions have made me a better person for some of the reasons I have mentioned above. It is difficult sometimes because I walk in everyone's shoes to better understand and somehow help share their load.

Tonight I walk in your shoes. The best information I can give your right now is that you must continue to have hope. We should never give up. We are in good hands and have great purpose and opportunity no matter what life throws at us. Continue to do what you can to improve your health and feel good about yourself. Your doctor should be someone you feel comfortable with and should also be encouraging you.

We are here to encourage you. Please keep us posted.
@vdouglas
(Von)

Mar 1, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @gabrield , I hope you are doing well despite the diagnosis and we all welcome to the Mayo Clinic Connect. We are glad you chose to join the group.

We understand and have experienced many of the struggles all too typical of this disease. Maybe we can help should you have questions.
@vdouglas
(Von)

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

Hello @ricklaff51 , I join @pcfromfm in welcoming you to the Mayo Clinic Connect. Yes the Connect community is still active and ready to listen. As you may already know, we are a group of patients and caring individuals who have experienced the struggles of dealing with Mesenteric Panniculitis or Sclerosing Mesenteritis.
How are you today and what brings you to the Connect?
@vdouglas
von

Jan 31, 2018 · Rapid heart rate in Heart Rhythm Conditions

Hello @sandra1953 , I do understand your concern about taking beta blockers with low blood pressure. I am not familiar with POTS but did a little checking and found some information that addresses POTS or postural tachycardia syndrome. Reading this information completely will offer some suggestions beyond medications and exercise. You may have already read this but if not you can with this link: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/

In this Mayo Clinic article the doctors name is cited and may also be a valuable resource: https://www.mayoclinic.org/biographies/cutsforth-gregory-jeremy-k-m-d/bio-20213586?_ga=2.203123158.672909782.1517284842-1947922716.1453860097Dr. Jeremy Cutsforth-Gregory, Neurology, Mayo Clinic, Rochester, Minnesota

If there is any interest, you can also ask your doctor about another medication used to treat POTS called Flourinef. I read that some patients take .1 mg and .3 mg of Flourinef per day. Flourinef helps your kidneys retain more salt, which in turn helps your kidneys conserve water, which in turn increases your blood volume, which increases your blood pressure and in theory lessens your symptoms.

I hope you find this information useful and maybe someone with POTS experience can offer some advice.
Best wishes to you,
@vdouglas
(Von)

Jan 29, 2018 · Rapid heart rate in Heart Rhythm Conditions

Hello @sandra1953 , welcome to the Mayo Clinic Connect. Very scary to say the least and it really does wear you down physically and emotionally. A rapid pounding heartbeat, as you described it, doesn’t sound “normal” to me and it is obviously very distressing to you. My experience with those symptoms was due to mitral valve prolapse. I was prescribed beta blockers to help with the rapid heartbeat (tachycardia) and the pounding heartbeat. The beta blockers along with staying very active did the trick. I have not had the pounding heart in many years now, knock on the wooden desk I’m sitting at. The mitral valve prolapse has left me with frequent PVC’s which I continue to frustratingly tolerate and try to ignore.

I do not know what it is causing your symptoms. As Colleen mentioned the diagnosis is up to your cardiologist. Generally they will want to do a few test that are not very invasive, you may have already had them done. I’m not clear on what test your physician and cardiologist has performed and why the offer was made to start you on a beta blocker but I would certainly consider giving it a try “if your cardiologist approves”. At first I was afraid to take the beta blockers, I hate meds, but they were “very” well tolerated. I did not even know I was taking them. I stayed active while I was taking them which I think helps. I have taken a beta blocker for about 37 yrs. and have only good things to say regarding them. Since you have low blood pressure I would not recommend starting them without the blessing of both PCP and cardiologist. Have there been any comments about the your low blood pressure possibly being the cause? That is something I would ask about.

I’m confident that if you work with your PCP and cardiologist you will get your problem resolved and feel much better. It may take a little effort and maybe some lifestyle changes along with the medication but it will be worth it.

Best wishes,
@vdouglas
Von

Jan 24, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @skywave ,

Welcome to the Mayo Clinic Connect. I’m glad you found this site and I hope it can be helpful to you. Sorry to hear you are struggling with some unpleasant symptoms. One of the main difficulties with Mesenteric Panniculitis is finding doctors who are familiar with the disease. I don’t know that the bloating and low B12/iron are caused by MP but the bloating is a common symptom.

I have been to the Rochester Mayo Clinic and I can attest that the Gastroenterology staff are familiar with this disease and it’s progression. The treatment for MP is limited and there is no cure but it is treatable and it is very reassuring to know how it is affecting your Mesentery and to know whether your symptoms are being caused by the MP or something else. Although I was not having symptoms when I visited the Rochester Mayo Clinic, I found out everything I needed to know. The doctor actually went over my CT scans with me and explained everything he was looking at. This is the first time a doctor actually looked at my CT scans other than at the ER. My local doctors read the CT written report and that was it.

I have borrowed the following paragraph from one of our Moderators ( @kanaazpereira ) as I think she says it so well: “If it gives you any reassurance, I’d like to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here”: http://www.mayoclinic.org/appointments

Can you tolerate Prednisone? This is usually the first line of defense once diagnosed with symptoms. Please see attached information: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161

Looking forward to your response and best wishes to you.
@vdouglas