Discussions By Condition: I cannot get a diagnosis.

Diagnosis of Sclerosing Mesenteritis - Treatments failing need help =[

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Mikep480
  • March 7, 2008
  • 03:59 AM

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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24 Replies:

  • dear mike.. im responding to your need for info im touched by your letter and feel i should respond with wut ino about this desease...i no someone who has been diagnosed with this desease...i dont no how much uno but here goes wut ino hope it helps my friend. this desease is characterized by fat necrosis, chronic inflammatory inflitrate and fibrosis. this predominatly effecets the small bowl mesentery. The mesentery Is what connects the small intestine to the posterior abdominal wall, specifically the 2nd and 3rd parts of the small intestine the jejunum and ileum respectively. Patiants can present with abdominal pains, vomiting ,and abdominal masses which may be singular or multiple.Other important things to no is some have fat around the mesenteric arteries spared and presents on ct scan as what is called a fat ring sign. Now as far as intestinal obstruction this is due to not invagination of the small intestine itself but becomes of fibrosis that occurs in the mesentery.Fibrosis is basically scar tissue and scar tissur retracts so what happens here is the mesentary will shrink there by causing possible obstruction. This is a very rare desease as u have stated and the treatment for this can include corticoidsteroids ,immunsurpressant drugsand colchicines.I dont no all your case specifically but would like to say prognosis in most cases is good as the progression of the desease tends to slow down.Also in 20 percent of the cases the mesocolon is also effected and other areas although rarier might include the mesopendix/the omentum and the peripancreial area to name a few. It is a desease of the membranes of the abdomin ,mostly effecting the mesentary but can go to these other areas. I HOPE SOME OF THIS HELPS MIKE GOOD LUCK AND RESPOND BACK .If i can help somemore let me no. your friend spehnoid
    Anonymous 42789 Replies Flag this Response
  • Mike,I had a similar diagnosis when I was in my late 30's; other terms for my condition were inflammatory pseudotumor and mesenteric panniculitis. I was referred eventually to a very good rheumatologist; he prescribed prednisone as a starter, to combat the inflammation...but long-term prednisone has problems so the idea was to start reducing the dosage as soon as possible. He also prescribed an immunosuppressant. The first one, methotrexate, didn't have any effect. He then switched me to azathioprine, which worked. We tapered off the prednisone over time, and eventually I was on azathioprine only. The pseudotumor mass/swelling reduced significantly, and when it stabilized at a minimum (residual scar tissue basically) we discontinued the azathioprine. I was on meds for probably 5 years overall. I was treated by Dr Dan Furst; I believe he is now at UCLA, and he is one of the top rheumatologists in the country, involved with research on rheumatoid arthritis, scleroderma and other autoimmune diseases. Good luck.
    eric9456 1 Replies Flag this Response
  • Spehnoid and Eric, thank you both SO much for your posts! It really, really meant a lot to me because I feel so alone with this diagnosis and now I know I'm not. The medications that both of you talked about are unfamiliar to me which is very exciting, because it certainly seems that it worked for your friend, Spehnoid, and for you yourself, Eric. So those are both new ideas for me to take to my doctors, and ideas are something that my doctors and I are very low on..but not anymore! I started with surgery to attempt to diagnose the abdominal pain and fatigue I was experiencing, and while they were in there doing biopsies they attempted to remove the mass they found but were unable due to vascular problems. After that, I was placed on Prednisone like you, Eric, as well as Tamoxifen, but they had little or no effect on slowing the progression. After that, I proceeded to get referral after referral to GI docs and surgeons, all of whom basically said we have no idea what to do, sorry and good luck. This included the head of the GI departments at Yale-New Haven Hospital and Mass General in Boston, so I was seeing quality doctors but still no luck. A few days ago, a Doctor from the Mayo Clinic in MN replied to my email and suggested Thalidomide, but after trying dozens of pharmacies in my area for the last 3 days, none of them are able to order it and fill my prescription. So I'm having difficulties there. I have an appointment tomorrow morning with one of my doctors, and I am printing out both of your replies to discuss with him in the morning. =D Thank you SO much, you have both given me more hope, and until recently I was convinced that this was going to slowly kill me because no one could help. It's been a year now since diagnosis, and my tolerance to the pain killers has risen and I am suffering a lot at this point, reduced to laying in a fetal position ball in my bed 75% of my life now waiting for death. I will be sure to contact you both if my doctor or I have any questions about your posts. Thanks again and take care, will let you know how it's going. =DMike
    Mikep480 2 Replies Flag this Response
  • Hello Mike, I have SM and there is a forum that is excellent where we talk about our illness. Please join the group, we would be happy to help you. Some of us are under therapy at the Mayo Clinic either in Minnesota or Florida with GI specialists who know so much about SM. However some are not, and some are from out of the USA as well. It is a perfect place for you to get help. There is even a physician on board with us that gives direction, and there are articles archived, as well as all of our collective experiences...You cannot do better!To join the group go to this email address below, and join the group. It is an excellent support group and has lots of help - truly! Here is the address:screamingbellies@yahoogroups.com See you on the forum soon Mike! :) Carrie in CA - Sclerosing Mesenteritis PatientHebrewGirl@aol.com
    Carrrie 1 Replies Flag this Response
  • Mike, I read your post and my heart sank. I probably should not even be posting here because I know nothing about the disease that you have, nor have I ever heard of it. But there are some things that are very important that I have learned over the past few years. I know we all feel we need doctors and modern medicine to treat all of our health problems. That is what we are taught. But, our bodies are our best doctors. When you cut your finger, the doctor doesn't heal it. You BODY does. The doctor can only give you something to either assist in the healing or treat symptoms. They don't heal you. Your DNA is the map that puts the body back together when it falls apart. During the course of our lives, we consume so many deadly chemicals into our systems. These chemicals build up in us and cause the massive amounts of diseases that are growing astronomically in the US. Cancers, diabetes, heart disease,etc.. Think about it, 50 years ago these diseases were very uncommon. Now they effect about 2 in every household. Our immune systems are being destroyed by preservitives and lack of vitamins and especially minerals. I know you're thinking, yeah right, if it were that simple then the doctors and hospitals would have us all in ship shape with a little vitamin and mineral supplements. Understand this, the material that the doctors study in med school is provided by the pharmaceutical companies. The pharmaceutical companies are only interested in making money. They are only interested in treating symptoms, not in CURING any disease. I sound stupid, huh. This is the age of modern medicine. Technology and testing procedures for cures in this day and age have got to be so advanced. The American People have donated so much money for cancer research, diabetes research, Jerry Lewis' Muscular Dystropy telethons, and the big trillion dollar donation list goes on and on. But, did you know this little tidbit. Do you know the last disease that was CURED. Polio back in the 40's. It was cured by Jonas Salk. So, are we to believe that our superfinanced, pharmaceutical cartels, with our superhightech testing facilities have been busting their guts out for over sixty years looking for a cure for something, but have come up with a big fat GOOSE EGG! "0" It's time to wake up and smell the coffee. The pharmaceutical companies are well aware of what cures the illnesses that are destroying us. The problem is that they can't patent natural substances. They can't charge you $200.00 for a bottle of calcium, or $350.00 for a bottle of vitamin E. Back in the 40's when Jonas Salk cured Polio. He did it because his wife became infected with the disease. The pharmaceutical companies learned a very nasty lesson. At that time they were making a fortune off of treating the symptoms of Polio When a cure was found, the Polio symptom treating market was gone. The pharmaceutical cartel vowed not to let that ever happen again. And guess what, they've kept their word. No cures since, and no cures on the horizon. Do you really think they would announce a cure for cancer. Especially if it could be bought for less than 10 dollars a bottle. How much money would modern medicine lose if there was no need for expensive Chemotherapy, and all of the other expensive cancer treatments. Pharmaceutical companies don't want a country full of healthy people. Thats bad business for them. Do your research, their money also has the FDA by the testicles. The pharmaceutical companies are responsible for putting chemicals in our foods that destroy our digestive systems. The digestive tract is where most of the diseases that we get originate from in one way or another. Slow digestion, rotting food, chemicals that make their way to every organ in the body, all contribute to every health problem that we face. The key is to educate yourself. Don't get me wrong. Doctors are not bad. They have simply never been instructed on how to cure a patient. They have been taught 2 things. 1. If its bad, they cut it out of you, or 2. Treat the symptoms. Cure's haven't been made available to them for the last 60 years. Remember, the information in the books at med school came from studies from the profiteering pharmaceutical cartels. OK, lecture over! I'm sorry if I sound like some crazy radical idiot. I'm not, I'm a hard working middle aged father of two girls here in the good ole US of A. I've done a great deal of research on natural substances and the blind trust that our nation has put in its leaders to make sure that we were taken care of. My eyes are open and I'm *****d at what I see. Like I said, I don't know much about your disease, but you might want to do some research into some type of homeopathic medicine sites. You need to get the toxins out your body. Then you need to feed your body what it needs to allow your body to heal itself. You need to consult a good homeopathic doctor and they will work with your regular doctor. A good homeopathic doctor will give you natural substances that will help your body to do what it is struggling to do now, which is heal itself. Your best prescription right now is education on natural substances. This is a pretty good place to start. But there are thousands of holistic and homeopathic sites and info. Oh yeah, you might want to research DMSO. It is a natural substance that has so many wonderful uses. When you find out all of the medical uses of DMSO, you might want to ask yourself why is this information not made available to medical doctors. Well, I've embarrased myself enough, this post was meant to hopefully give you another avenue to pursue, I hope I haven't offended you in any way with my post. God bless you and I hope one of Gods miracles finds you. I will be praying for you.
    Lyneteck 1 Replies Flag this Response
  • Mike I am a 71 year old man that has this rare SM disease for more then five years and have had a battery of drugs and also have the rejection of many doctors that just don't know what to do, and also don't know where to refer you. I spent many hours on the WEb, and there are procedures that can help. I was a patient at the Clevland Clinic. I chose one of procedures that was outlined for and has helped me going on four months. The Clinic would be a good place for you to start. It is unfortinate that this posting sight does not permit any personal identifiable information, for I have a lot of experience with this disease. If you know of a method that we could talk, let me know, good luck. Gayland in Vermont SM patient.
    Anonymous 42789 Replies Flag this Response
  • I felt as though I was reading my own story. I was diagnosed about 3 months ago with mesenteric panniculitis. The treatments aren't helping( I look as though I am about 7 months pregnant from all the distension), my doctors think I am a drug seeker, and I am beginning to lose hope. I am 39 years old and an RN. I have been unable to work since Dec. 5th of 08. Performing simple ADL's is becoming difficult. I feel for you and I understand.
    Anonymous 42789 Replies Flag this Response
  • Dear Heather , There is a procedure that can be done that may help, it is called a bi-lateral celiac plexus block. It's done at Cleveland Clinic and sure other hospitals as well. I have alot of empathy for you and your problem, I have been there. Regards nelag
    Anonymous 42789 Replies Flag this Response
  • My heart goes out to all you victims of this tragic disease.As a physician myself,I'd never heard of it!Good luck to all of you.
    richard wayne2b 1232 Replies Flag this Response
  • Has anyone tried doing a Lifestyle Change? Here is information on how to strengthen your Immune system which needs to be in good condition to help ward off and heal any diseases. Please consider this information.The Immune System - How to Strengthen itWithin all of our bodies there is an army at work. As with the nations of the world, some of these armies are strong and some of them are weak. Some of them are ever vigilant for invaders; some of them fight the very country they were employed to defend. Those of us with strong immune systems are best able to ward off many invaders and thus stand a lessened risk of disease. Others have immune systems which rebel and attack the very bodies they were created to defend; we call these situations autoimmune disorders. Lupus and rheumatoid arthritis are among the autoimmune disorders. There are two main factors which determine the condition of our immune systems; heredity and lifestyle. There is nothing we can do about our heredity except take a warning from it, but we all can do much for our lifestyles which can not only improve our chances of avoiding the chronic diseases which plague our society, but can begin to reclaim ground lost in your heredity so that you will be able to pass on a better legacy to your heirs. So, without a long explanation on the wonders of the immune system (see the June 1987 issue of National Geographic for that), what follows will be a step by step explanation of how to strengthen the immune system. This program will be beneficial for those having the most ominous chronic diseases such as cancer and AIDS; and most of the principles will also be of benefit to those who are healthy and would like to remain that way.1. The objectives of our treatments are to improve circulation to and oxygenation of the cells, to change the intestinal flora with a high fiber vegetarian diet, to discourage cancer cell growth with hot baths, to stimulate the immune mechanism for cancer and infection resistance, and to combat toxins causing anemia and loss of appetite.2. The family and friends should have regular prayer for a miracle from heaven. Trust God that He is loving, forgiving, healing and comforting. Trust Him that every trial is for our development somehow, even when it appears destructive. When Jacob was wrestling with the angel, it appeared that having his thigh go out of joint was a terrible calamity which would disable him, and he would not be able to save himself and his family. But when his brother Esau saw the limp Jacob was left with, Esau became sympathetic and his murderous wrath ceased. The trust exerted stimulates the endorphin system, strengthening the immune system.3. The Ideal Diet - The diet should be totally vegetarian, leaving off all fats, all refined sugars, chemical additives, spices (but not herbs), and vinegar, majoring on raw food and fresh juices, especially carrots, and beets. (a) Take two to three meals per day. Two are best. Never snack. Not a sip, or a taste or morsel between meals. (b) Have a set time for meals. Establish regularity and regimentation as far as meals and sleep schedules are concerned. (c) Read labels for irritants, harmful foods and additives such as vinegar, monosodium glutamate, pepper (black, red, cayenne, “hot”), baking powder and soda, animal products, ginger, cinnamon, nutmeg, cloves and allspice. (d) Omit one to three meals weekly unless underweight. (e) Eat a lot of fruits and vegetables uncooked. (f) Eat slowly and chew well. (g) Cook grains and legumes thoroughly. Grain preparations such as cracked or whole kernel must be boiled gently for at least three hours. Rolled grains need l1/2 hours. Cooking grains in a good crock pot is helpful. (h) Enjoy gardening, but do not work to the point of exhaustion. (i) Omit liquid foods at meals except on rare occasions. Liquid foods are pops, juices, watery soups and other beverages. If juices are required in greater quantity than 8 oz, make a meal of them only, and sip them slowly, mixing well with saliva. (j) Use frozen fruit blended with a little fruit juice, occasionally, as an ice-cream substitute on hot days. (k) Shop at health food stores and produce markets that keep fresh food because of a rapid turnover. (l) Let five hours pass between the end of one meal and the beginning of the next. (m) Never use soft drinks, coffee, teas, medicines, chocolate. May use herb teas. (n) Drink an 8 oz. glass of fresh carrot juice daily and sip it slowly at the beginning of a vegetable, not fruit, meal. (o) Eat fresh carrots, grapes, cabbage, asparagus, brussels sprouts, beets, broccoli, dark greens, kohlrabi and cauliflower. (p) Eat raw fruit or make fresh juice, including fresh lemon and grape or carrot juice. But don’t eat, or drink the juice of, both fruits and vegetables at the same meal. If possible, 50-80% of the meal should be taken raw. Asparagus and garlic have both been ascribed antiviral, anticancer qualities. Aloe vera has a carbohydrate which may slow down the reproduction of HIV and boost the immune system. Licorice root tea also boosts immunity. (q) Frequently choose cooked grains or vegetables from the following list. These foods are selected because of their low phenylalanine and lysine content:Potatoes (white or sweet), Corn, Oats, Carrots, Buckwheat, Wheat, Rice, Barley, Millet, Rye, etc. (r) Use immature legumes such as field peas or green peas not more than twice a week, as they are high in phenylalanine and lysine. Select only one at a meal. (s) Use whole grain cereals or quick breads without sugar, baking powder or soda, or excessive salt.4. Teas (Antimicrobial)- (These teas should be taken continuously by those having a serious chronic disease.) (a) Echinacea and Chaparral. Echinacea strengthens the immune system and Chaparral is an antibiotic. Put one heaping tablespoon of Echinacea in one quart of boiling water and boil gently for 30 minutes. Turn the flame off and add 2 tablespoons of Chaparral. Let this mixture steep for 15 minutes. Drink one cup first thing in the morning and finish the remainder of the quart throughout the day. This is one day’s dose. You must make the teas fresh daily; they lose their potency after 24 hours. (b) Pau d’ Arco, Blue Violet and Red Clover. These herbs strengthen the immune system and cleanse the blood. Add 3 tablespoons of Pau d’ Arco to one quart of boiling water and boil gently for 15 minutes. Turn flame off, add 2 tablespoons of Blue Violet and 2 tablespoons of Red Clover to the Pau d’ Arco and let the mixture steep for 15 minutes. (c) Do not use sweeteners in your teas. Though they are medicinal and may not appeal to your taste, the herbs were given to us by our Creator for healing. Drink them faithfully! (d) Golden Seal and Aloe Vera may be used. (e) Consider the herb teas as part of your 8-10 cups of daily water intake. (f) The herb teas should be continued after the fever treatments stop.This is too long for one post, I will post the rest.
    Anonymous 42789 Replies Flag this Response
  • A SUGGESTED MEAL PLANGenerous Breakfast: Fruit Meal................. Breakfast main dish, Raw fruit, Other fruit, Whole grain bread, Fruit bread or spreadFruit meal: Spreads & Side dishesCrushed Pineapple, Fruit Puddings, Apple Butter, Stewed Fruit Puree,Pear Butter, Thick Apple Sauce, Avocado 1/4-1/3, Fruit Leather, Olives 4-6,Fruit Butter or Spread Good Dinner: Vegetable Meal.................... Dinner Main Dish, Raw Vegetable or Salad, Cooked Vegetable, Whole Grain Bread, Side Dish or Spread Oil-Free Spreads and Side Dishes Coconut, Seeds, Nuts and Peanuts, One Tablespoon Millet Butter or Avocado SpreadGravies and Sauces:Cream Sauce, Millet Spread, Nut Gravies, Tomato Catsup, Brown Gravy,Tomato-Pepper Puree, Bean Puree, Onion-Lemon Puree Spare Supper (or none).................................... Fruit or Fruit Sauce, Herb teas, Bread, Crackers, Cereal5. Evening Primrose oil - large doses (it incorporates into the viral membrane wall increasing the susceptibility to the fever treatments). Use up to 12 capsules a day during fever series.6. Use the most excellent hygiene - vegetarian diet, exercise, sunshine, regularity, early to bed, scrupulous cleanliness, orderliness, etc..7. Use of garlic: 4 capsules, 8 tablets or one to two fresh cloves taken 3 times daily at mealtimes.8. Give a 3-week course of zinc supplementation, 15 mg. per day.9. Cold mitten friction: This hydrotherapy measure can be done several times a day, as often as once an hour, as the energy of the patient or the availability of time permits. Use it at least twice a day. It is a good stimulant of the immune system.10. Use fever treatments (see method given below). An infant under three years of age should have the temperature very carefully controlled, bringing the oral or rectal temperature up to 103o F, but not holding it there. This may take only five to six minutes.11. Continue cold mitten friction after fever series.12. Take alternating hot and cold daily showers every morning or evening.13. Exercise should consist of walking and purposeful outdoor labor as much as possible. Other suggestions include the following: (a) Swim. (b) Split wood. (c) Cycle: Stationary, three-wheeled, etc. (d) Walk, walk, walk. (e) Jog on padded surfaces as appropriate. (f) Use rebounders (small trampolines), and simply bounce if your strength is not sufficient to jump. (g) Do gardening. (h) Spas are useful if you have no other exercise possibilities. (i) Lawn care is excellent outdoor work (j) Do exercises daily, progressively, religiously, especially light exercise after meals which promotes good digestion (k) Get a minimum of 20 minutes, and up to 10 miles of walking daily. Exercise produces brain substances (endorphins) which "do good like a medicine." (l) If you do not feel like exercising, massage can help as it is "passive exercise." Range of motion exercises can also help.14. Water is a cleanser and a healer, used externally and internally. (a) 6-10 cups of water, as pure as possible, between meals each day. Regular bowel movements daily are very important. Two cups of very warm water upon arising in the morning are very helpful for this. Most of the water you need will be supplied in the form of the herb teas listed above. (b) A daily bath is essential, personal hygiene is a must. Wear a clean change of clothes daily. (c) Clean and neat living conditions and fastidious kitchen facilities are important. (d) Fifteen fever treatments spread over three weeks constitutes one series of treatments. Give two series of three weeks each, pausing for one week after the first three weeks before beginning the second series. There should be five treatments in a week, but not usually more than one fever treatment per day for adults. Interrupt the treatment program every five days with a two-day rest. If the patient responds to the two series of treatments, in three months, using the same routine, go through another two series of the fever treatments.i. Use a hot bath of 108-110 degrees F. to accomplish this "Fever" or “Hyperthermia” treatment.ii. Obtain 102-104 degrees F. orally and maintain it for 20-40 minutes, as tolerated.iii. When the oral temperature goes above 100 degrees F. or the patient begins to sweat, keep the face and head very cool with icy cloths changed often.iv. Keep the bath water 110-112 degrees F. while the oral temperature is 102-105 degrees F. Do this by draining off some of the cooling water and adding hot water.v. End the hot treatment with a tepid shower, brisk drying, one hour of bed rest with an ice pack wrapped in a towel on the forehead.vi. Prevent chilling after the treatment.vii. Abort the treatment if the heart rate rises above 160 in a person under age 50. Abort the treatment if the heart rate rises above 140 in a person over age 50. For more details on fever treatments see the book Home Remedies.15. Sunshine - A 20 to 30 minute sunbath daily would be helpful. It is adequate to expose only the face and arms. Always avoid the sun as much as possible between the hours of 10 a.m. and 4 p.m., as it actually reduces the immunity.16. Moderation - God will supply power and help for all your needs once and for all: overeating, snacking between meals, indulgence of unhealthful habits (caffeine, nicotine, marijuana), purging, prescription or nonprescription drug usage, masturbation or other improper expressions of sexuality.17. Air (a) Fresh, outdoor air. Avoid smog, motor exhaust, hydrocarbons, tobacco smoke, hairspray and other toxic substances. (b) Keep correct posture. (c) Keep sleeping rooms well aired, summer and winter, good weather and bad, being careful not to sleep in a draft. (d) Spend more and more time out-of-doors. (e) Take 20 deep breaths outdoors or near an open window 2-4 times per day. (f) Blow up balloons to encourage oxygenation of tissues. (g) Hike in the beauties of nature. (h) Spend time out of cities as much as possible. (i) Remember that prayer is the breath of the soul.18. Rest (a) Establish regularity, routine, order and predictability of daily activities. (b) Simplicity, quietness of living is the goal. (c) Refuse consistent overworking or hectic pacing. (d) Quit your overly stressful job and whittle various involvements out of your life. (e) Prioritize your life with much prayer. (f) Keep the Sabbath holy. God made the Sabbath for man and specially blesses those who commune with Him that day by spending every possible moment in Bible reading, meditation, prayer, and studying spiritual lessons in nature. You need a day of rest, and you also need the blessing of knowing that particular segment of the week is a memorial to man’s creation. We are that special to God (g) Rise and retire at set times. If you work afternoon or night shifts, change job assignments if at all possible. (h) Omit TV, Rock n’ Roll, novels, love stories, idle talk, frivolity and any other neurologically exciting but depleting activities. Just as things we see can cause profound mental and emotional changes, so can what we hear. Give yourself every advantage. (i) Learn to live simply, spending less money on yourself, more to help others. (j) Refuse to defend yourself, argue, worry or complain. (k) If you are not sleeping well at night, do not nap during the afternoon. You may take a short nap (less than an hour) before dinner. (l) Try to have one day off each week besides Sabbath. Use this day for personal chores and private projects; this is not selfish. Your first duty to God and to others is that of self-development.19. Trust in divine power (a) Reevaluate your relationship to God. (b) Begin each day or end each day with a quiet hour or so alone with God in prayer and Bible reading. (c) Keep your joys, thanks, needs, sorrows, sins, cares and fears before God. (d) Talk to Him all day. Recognize that a divine being, a guardian angel, is always with you. (e) Read Desire of Ages, Ministry of Healing, (Health and Happiness), and Counsels on Diet and Foods. Take seriously any lessons learned, even if they seem unimportant. (f) Participate in morning and evening devotions. (g) Become a committed Christian anew every day. (h) Accept the circumstances of daily life even if they are not what you may have planned or chosen. Everything God allows to come to you is an education, even the trials. If accepted graciously, all trials bring joy. (i) Pray for God’s will to be done and do not insist on healing. He doesn’t heal everyone but He desires to save every living soul - all who give their full allegiance to Him. Have faith that God will accomplish the very best thing for your life. (j) Be thankful, cheerful, prayerful. These attitudes produce the endorphins. These are merry hormones and happy chemicals that fight cancer and promote a sense of well-being. (k) Consider an anointing service. (l) You will need our Lord to help you make these lifestyle changes and to maintain them.20. Dress (a) Wear simple, modest, healthful, clean and attractive clothing. (b) Natural fibers and blends are best. (c) Keep your limbs as warm as your forehead. (d) Do not have more layers on the trunk than on the feet and calves. (e) Wear no tight bands or restrictive garments, especially around the chest and abdomen.
    Anonymous 42789 Replies Flag this Response
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  • Hi Mike...my name is Roger and I was diagnosed with sclerosing mesenteritis two years ago. I have had on going pain in my stomach for a long time. A little over a year ago I had a laparotomy surgery with two masses removed and section of bowel repaired. This came with relief until a few months ago I started having pain again along with diarhea. I had a CT scan and it showed the area I had surgery on to be improved but now I have multiple spots on the otherside. I too have been to countless appointments and scans and conlonoscopies. I have had specialist tell me they do not know what to do with me.I too have researched this disease and have not really found anything new or that you have not already tried. The surgery helped for a while I guess. I too work on a ambulance and have been in the EMS field for thirteen years and have ignored my own symptoms. I will keep checking for any news that could help us. Please contact me anytime. Good luck and keep the faith.
    Anonymous 42789 Replies
    • August 20, 2009
    • 11:53 PM
    • 0
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  • My husband has a very severe case of sclerosing mesenteritis, which is at the fibotic stage. He is a patient at Mayo Jacksonville and has been seen by gastroenterology in Rochester as well. He did not respond to the treatments of tamoxifen, or colchicine or prednisone, particularly. Despite taking these for months on end, he only experiences some minor alleviation of the abdominal pain from prednisone. He was originally diagnosed in 2007 by biopsy. he has extreme daily pain and profuse sweating as well as daily fevers. He started having odd spasms in his arms and legs recently and is unable to drive or read or concentrate or work. He is about to start thalidomide. One of the physicians at Mayo suggested that if the thalidomide was unsuccessful that an anti cancer treatment might help--it begins with a c, can't think of it at the moment. We feel for anyone of has this rare but debilitating disease. Wife of sufferer.Hi Mike...my name is Roger and I was diagnosed with sclerosing mesenteritis two years ago. I have had on going pain in my stomach for a long time. A little over a year ago I had a laparotomy surgery with two masses removed and section of bowel repaired. This came with relief until a few months ago I started having pain again along with diarhea. I had a CT scan and it showed the area I had surgery on to be improved but now I have multiple spots on the otherside. I too have been to countless appointments and scans and conlonoscopies. I have had specialist tell me they do not know what to do with me.I too have researched this disease and have not really found anything new or that you have not already tried. The surgery helped for a while I guess. I too work on a ambulance and have been in the EMS field for thirteen years and have ignored my own symptoms. I will keep checking for any news that could help us. Please contact me anytime. Good luck and keep the faith.
    Anonymous 42789 Replies
    • September 24, 2009
    • 00:34 AM
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  • Hello, I am 37 and have just been diagnosed with sclerosing mesenteritis. I have been on prednesone for 3 days now, I hope it helps. I have found the other posts on here interesting, wil check them out. thanks everyone for your help.
    Anonymous 42789 Replies
    • January 3, 2010
    • 02:20 AM
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  • Hi! A little bit about me. I AM a AdenoSurvivor, 13 yrs. ago of AdenoCarcinoma of the Cervix. I met a guy who told me the importance of thinking outside the box. Oxygen, Nutrition & Cleansing is Vital. Once we have 'health concerns' our bodies are stress,stuggling, which has toxins backing up within, due to our filter system & internal body not able to proform 100% for our good! Oxygen is vital for our body to stay healthy & for our internal body to have the ability to heal itself. EX: Take (2) people take fell into water & were unconscious. The question, that is ask. will they have BrainDamageInjury:o. The Key is Oxygen. If, they Brains were not without Oxygen, as Oxygen is Vital, it is our 'Breath of Life'. Oxygen is needed for our body/organs to be healthy. Lungs! (2) functions, Oxygen into our bodies & Carbon Dioxide out. Our lungs either work 100% for us or slowly change to not perform well, therefore our bodies now have internal changes to it's high performance, being able to be maintained! Make a list of your Interanl Organs! Google their functions & what they should be doing to keep us healthy. If our Organs don't have lots of Nutritional food to stay healthy, then the word, that scientist use, it's called 'Intropy' The body breaking down & not able to Rebuild, Repair & Regenerate. We call it aging. We have learned to except aging to be part of life. The reality is, our bodies are Amazing & want to be healthy. We abuse our body with the fun things in life, like eating foods that taste so good but do not have enough Nutrition to get into our bodies. I read the one post from someone. It had alot of Fruits. Since my Cancer, I won't eat alot of fruits, as it fuels Candida. My understanding Cancer is a sugar feeder & I had the fast growing Cancer! I stopped the fire by changing to High Protein Diet to stop the Cancer continuing to grow! I can't say it enough! We are what we eat! If we eat depleted food, then our bodies become depleted. I flooded my body with Liquid Nutrition & Gentle Cleansing to support fighting the Internal health crisis war that was going on within me. When I got my cancer, I was eating (2) Bananas a day, (2) Oranges a day, (2) Yogurts a day. I had really bad smelly, sticky gas! I was also eating my favorite junk foods. I completely wore my Pancreas out. I was Diagnois as being very bad case of Hypoglycemic! My PancreasCure:) was to give my Pancreas a rest. This is the reason I started eating lots of Protein, so my Pancreas could just relax, instead of working overtime to counter my extreme, constant blood sugar in my body. My Carbs. & Starctches, along with my sugar eating was very high. There are lots of M.D.'s out there!There is the VERY best technology out there!We live in a world now, with the ability to communicate to people everywhere. Be a seeker of truth, continue to look for the method that is different from what you have been doing. Since what you are doing isn't making you better, be open to change. There are Naturalpath's, Chiropractors, Osteopath, etc. Learn about Chi life force energy. Try Acupunture. Ask other Chiropractors & Alternative professionals, what are all the methods out there now? Find someone that does Energy work in your area, Reiki/ Q.T. healing. Some people have found Yoga & Chi work to help them feel bette, if they have the energy to do this, some people don't have the energy to do this and don't want to stress their bodies more. If the Medical has done every test, they are just not sure what they can do, they are just puzzled and even told you that thay are not sure how to help you, then find a new path, search and learn about it.;) Only because I listen to a guy, my life has been changed & my knowledge increased. Listen to what makes sense & resonates with you. Know the statics & listen to testimonies of others. Trust your gut feelings!!! As long as you are breathing, then you still can make changes to help yourself. This is how I thought with my Health Concern! It's about sharing & caring!:D Sincerely,AdenoSurvivor
    AdenoSurvivor 7 Replies
    • January 7, 2010
    • 05:15 PM
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  • Thank you all so much for all of this information! My husband was diagnosed a little over a week ago with SM. He woke up with a sudden onset of pain and after hours of pressuring him we went to a local walk in clinic and was advised to go to the E.R. immediately after waiting hours the CT scan results were in and the E.R. doctor came and advised us that my 29 year old husband had a tumor/mass on his messentry and he has never seen anything like it and they were going to admit him and he would have a surgery consultation the next morning after multiple docs came in and pressed on his stomach asking him questions and running more tests he was finally diagnosed and advised there is no know cause or cure and given 3 different IV meds/pain medication and sent home 3 days later on 5 different medications and he is still in a lot of pain. I am tired already of hearing how uncommon this is. Does anyone know a doctor who has knowledge of this in central Florida??Thank you so much,Nicolette
    Anonymous 42789 Replies Flag this Response
  • My heart goes out to all you victims of this tragic disease.As a physician myself,I'd never heard of it!Good luck to all of you.My husband is a 79 physician who has been diagnosed with this disease by Mayo's, and has had over 250 lbs of fluid removed since July of 2009. He had a biopsy in November showing the calcification was hard as bone. He was down to 111 lbs. He recently got a port put in and we are going to try some chelation and vitamin C IV's along with more amino acid IV's to see if that will help. A chiropractor friend mentioned a patient of his used coca cola (reg) to help pass kidney stones. Since kidney stones are a form of calcification and so is this diagnosis, we may resort to trying the a little coca cola. At least my husband has nothing wrong but low albumen, and is ambulatory, not in pain. It was my Dr. daughter-in-law taking pictures on the beach a year ago Christmas that told our Dr. son that his dad had ascites (fluid on the abdomen). He did not believe her, so she is the better Dr. Ha! Another Dr. Friend thought this might be a form of nanobacterium which is a honeycomb calcification hiding a bacteria. Whatever it is, little is known and we are doing our own experimenting. Good luck and a lot of prayers to those suffering!!!!
    Anonymous 42789 Replies Flag this Response
  • My heart goes out to all you victims of this tragic disease.As a physician myself,I'd never heard of it!Good luck to all of you.My husband is a 79 physician who has been diagnosed with this disease by Mayo's, and has had over 250 lbs of fluid removed since July of 2009. He had a biopsy in November showing the calcification was hard as bone. He was down to 111 lbs. He recently got a port put in and we are going to try some chelation and vitamin C IV's along with more amino acid IV's to see if that will help. A chiropractor friend mentioned a patient of his used coca cola (reg) to help pass kidney stones. Since kidney stones are a form of calcification and so is this diagnosis, we may resort to trying the a little coca cola. At least my husband has nothing wrong but low albumen, and is ambulatory, not in pain. It was my Dr. daughter-in-law taking pictures on the beach a year ago Christmas that told our Dr. son that his dad had ascites (fluid on the abdomen). He did not believe her, so she is the better Dr. Ha! Another Dr. Friend thought this might be a form of nanobacterium which is a honeycomb calcification hiding a bacteria. Whatever it is, little is known and we are doing our own experimenting. Good luck and a lot of prayers to those suffering!!!!
    Anonymous 42789 Replies Flag this Response
  • Hi my name is Matthew I was just diagnosed on Sclerosing mesenteritis.... please we need more info on this....
    Secretlabs1234 1 Replies
    • August 29, 2012
    • 05:32 AM
    • 0
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  • 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 Mike my name is Chet I feel just like you, i too has SM. it's been 2 years now and I am really struggling. I am taking prednisone and tamoxifen recommended by the university of Utah and mayo clinic. Have you found out any thing new because I am miserable 24/7. My name is Chet and I live in Idaho. My phone number is 208-720-6188. I am not good on a computer but if you like we can talk on the phone..Thanks, Chet
    Chethartdegen 2 Replies
    • November 21, 2012
    • 00:02 AM
    • 0
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