• Gastroparesis & MG?

    Posted by LIZ on September 5, 2024 at 11:17 am

    Hello,

    I have gMG. I had a thymectomy in 2022 with removal of thymoma. My symptoms are mostly controlled with medication. On bad days I’ll lose balance, have difficulty speaking, and choke often but otherwise ok. I recently had severe abdominal pain following a relatively small dinner. It felt like it was all stuck in my stomach and esophagus. It lasted several hours with lingering discomfort. In retrospect I often feel overly full after only a few bites of food, especially on very hot days or exhausting work days. Does anyone else experience this? Can it be MG related? Any suggestions? Thank you!

    DogMom replied 2 months ago 19 Members · 34 Replies
  • 34 Replies
  • Lou DeYenno

    Member
    September 6, 2024 at 2:36 pm

    My MG is well controlled with a regiment of Ultomiris, Mestinone and prednisone. My symptoms are minor, tiredness at times, and tired voice. But, when I eat, I eat small portions at meals and chew thoroughly and take my time swallowing, otherwise I get a bloated feeling and will have reflux. At times, water can be difficult to swallow.

    On the bright side, weight control is easy!

    • cupcake

      Member
      November 8, 2024 at 9:50 am

      Hi everyone this is the first time I have applied to this forum. I had my thymus removed in 2001, as I had a tumor on it. I had symptoms that started in 1998, the symptoms started on the day I lost my father. The drs kept saying the extreme weight loss from stress of losing my father. 2000 saw another Dr sent me straight up to hospital for a MRI. Following year had to have the operation in London. Following this I’ve been in remission since. The last year I’m back on 60mg of pyriodstigmine, recently apart from choking I’ve been getting a lot of pain in my gut and chest. I’ve been putting this down to heartburn. Reading the comments I’m now wondering if this is part of MG. I’m so sorry for long winded text. Looking forward to seeing what you all think Yasmin.

  • paul spychalski

    Member
    September 6, 2024 at 3:28 pm

    I lost 60 lbs and my be what you mentioned. At one time I could not eat 1chiken wing because i felt full and couldn’t eat. Have you found anything to help w/that?

    • Lou DeYenno

      Member
      September 6, 2024 at 4:45 pm

      I tend to eat small meals with minimal protein, a small starch (baked potato) and/or salad/veg). Light snacks in between. It seems to work for me. I add poultry and seafood which digest better than meats and minimal breads. My daughters are health coach’s and dietitians so I have good resources.

  • Kim

    Member
    September 6, 2024 at 3:47 pm

    Sorry for the long post/read ………Well, I don’t come on here much or a lot and I’ll tell you my eyes glow when I seen the word gastroparesis and MG!!! OMG! The Hell, I have been through in the last year and a half and gained almost 70 pounds in that time, constantly complained that I couldn’t eat I was always severely bloated, Looked 9 months pregnant, pain so much that I was in the ER almost all the time and they did nothing for me. Kept saying it was all a pain so much that I was in the ER almost all the time and they did nothing for me. Kept saying it was all anxiety, ( grrr ) Starving but everything would just sit in my upper stomach and hurt like hell!! Well FINALLY FINALLY THANK THE LORD God, an answer, and it was indeed gastroparesis!!! I also wasn’t getting better on the Linzess. They put me on. And all the laxatives in the world would not let me go and yet I used to always have severe diarrhea., but this all started after I had my gallbladder out! Just last week I did another test because nothing was working that was called SIBO and I came back positive with high levels of methane in my stomach on top of the gastroparesis! Let’s just say Ins. won’t pay for the meds. I need to cure it and I’m still sitting here miserable.!! so to answer your question YES gastroparesis and MG! my neurologist was wondering if it meant my stomach/intestine muscles were causing it. That we don’t have a positive answer on, but at least I finally got an answer. I’ve even lost a couple pounds. I can’t wait. for the day I can eat I’m so hungry and yet normally you lose weight but due to The constipation and SIBO IS CAUSING THE WEIGHT GAIN!

    • myr

      Member
      October 30, 2024 at 2:29 pm

      Oh my Kim! I can relate to what you’re going though. I’ve lost weight instead of gaining though. All this started when I had my gallbladder removed. I had a stomach emptying scan recently & showed I had a very slow gut. I also had and think I still have SIBO. The medication the doc gave me is making my myasthenia worse. 😩 Ugh very frustrating. Waiting to see doc again and see what to do next. In the meantime, all I can eat is small bland meals.

  • Lou DeYenno

    Member
    September 6, 2024 at 5:01 pm

    I’m sorry for your issues with MG! I have had bloating on few occasions but nothing like your problem and pain. I think the medical field I.e neurologists/researches need to look at other muscles that are possibly disrupted by MG like the digestive system! I have some cycles of diarrhea and constipation because of my meds, especially if I don’t eat something when taking them but I don’t always do it.

    • paul spychalski

      Member
      October 29, 2024 at 6:20 pm

      I take Opremazol and it helps!

    • paul spychalski

      Member
      November 6, 2024 at 4:31 pm

      Try Omeprazole it works on all those symptoms.

  • Ms.Will

    Member
    September 6, 2024 at 6:37 pm

    I was diagnosed with MG around the same time I was diagnosed with SIBO and Hemochromatosis back in 2019. It was miserable times ALL the time. Thankfully, I was recommended to a nutritionist who catered a LOW-FODMAP diet for me. I have other food issues besides the SIBO, so I do have to omit some of the options, but it has made a huge difference. I stand by it to this day.

    It also helps that by omitting those triggering foods completely I was able to determine which ones caused the swallowing issues I had as well as the tummy problems.

  • LIZ

    Member
    September 8, 2024 at 4:01 pm

    Thank you all for your responses. One significant challenge for me with gMG is always questioning if the new symptom is all in my head. Knowing we are struggling together makes me feel less alone and less scared. I’m learning to just stop and rest in a cool environment when these episodes happen, until my body resets. I think our shared experiences are ahead of what Drs have discovered or documented. I wish you all continued strength and healing.

  • greynold

    Member
    September 12, 2024 at 3:40 pm

    liz,

    Your MG history sounds similar to mine down to, I had a Thymectomy in 2021. I experienced Gastro-Paresis (GP) after being on Vyvgart Infusion for a year 2022-2023. I also have High BP and was taking a daily diuretic, named Hydrochlorothiazide (HCTz) I was speaking with another MG patient where I receive infusions and he indicated he had experienced the same thing, ultimately traced to the HCTz & MG. He was not on Vyvgart as at the time it was not approved for Sero-Negative MG. So I tried reducing HCTz dose to every other day and wonderfully my GP symptoms resolved. So, all I’m saying it that you might want to consider any other Rx drugs you’re taking and possible contribution to GP symptoms. Especially if there have been any recent change to your MG treatment. I had been on IVIG in the 2 years prior to Vyvgart Infusion and had no problems with GP like symptoms.

    Good luck finding the source of the issue. GP symptoms are terrible as well as dealing with MG.

    Greynold

  • Brittany

    Member
    September 13, 2024 at 8:33 am

    I have MG and I’m also a medical speech-language pathologist (SLP). SLPs treat difficulty swallowing (as well as communication disorders). The esophagus has both skeletal and smooth muscle. Skeletal muscle is most effected by MG but there are acetylcholine receptors all over our bodies. The top 1/3 of the esophagus is skeletal muscle, next 1/3 is part skeletal and part smooth, and the last 1/3 that connects to the stomach is all smooth muscle. MG definitely causes slowness of muscle movement, and therefore food movement through the esophagus! In the stomach and the intestines, acetylcholine has effects there too. With the antibodies we have blocking acetylcholine action in the intestines, we experience slower and more infrequent contractions of intestinal muscles and decrease in secretions there too. Beyond the GI tract, acetylcholine regulates heart contractions and blood pressure, controls the release of urine, and causes glands to secrete substances such as tears, saliva, milk, sweat, and digestive juices, there are a few more. It can get confusing because mestinon/pyridostigmine allows for more acetylcholine and can flip flop these symptoms. So instead of constipation caused by slow moving guts (MG culprit) we can have diarrhea from fast moving guts (pyrido culprit). This is how opposites can be related in medicine. Take your symptoms seriously and keep pursuing answers and relief! You’re the only one in your body and you are your best advocate!! Here is a resource to learn more about the effects of acetylcholine. https://my.clevelandclinic.org/health/articles/24568-acetylcholine-ach

    • Lou DeYenno

      Member
      September 13, 2024 at 4:04 pm

      Thank you for the details!

      I’ve had MG for 4+ years and have never been given any information about digestive issues. And I have many, just thinking it’s the meds. I’ve learned The only thing that works for me is small, lite meals with minimal proteins with vegetables and salads. And lots of liquids: water, juices and smoothies

      • paul spychalski

        Member
        September 14, 2024 at 12:09 pm

        Will do. Thank You.

      • paul spychalski

        Member
        November 6, 2024 at 4:28 pm

        I use Chewable Acidophilus, over the counter, it helps.

    • suzanne-x

      Member
      November 15, 2024 at 1:20 pm

      What awesome info, thx!! I def suspect gastroparesis, but unsure when it started — MG dx was 2010, then POTS in 2018/19. However, I’ve had GI issues / food sensitivities since 1990s.

    • DogMom

      Member
      November 19, 2024 at 10:22 pm

      Great info! Thanks for sharing!! 🙂

  • paul spychalski

    Member
    September 14, 2024 at 12:07 pm

    Do whatever works for you.

  • Jennie Morris

    Member
    October 22, 2024 at 8:22 pm

    Has anyone been diagnosed with Autoimmune gastrointestinal dysmotility? I’m thinking of looking into this as it better explains my stomach issues than gastroparesis.

    • LIZ

      Member
      October 23, 2024 at 4:16 pm

      Hi,

      I’ve never heard of that condition. I appreciate you bringing it to our attention. I’ll definitely look into it further, anything to better understand what’s causing my discomfort during and after eating. Thank you.

      • LIZ

        Member
        October 23, 2024 at 4:23 pm

        Here is how chatgpt sums up autoimmune gastrointestinal dysmotility. Obviously not the best source of information but a quick way to wrap my head around what it is. I agree with you, this is far more likely the cause of our issues. Thank you again.

      • paul spychalski

        Member
        November 1, 2024 at 10:10 am

        Thanks for that info. Bloating is a problem. I haven’t found anything that can control it.

  • Monica

    Member
    October 23, 2024 at 6:51 pm

    Hi everyone I have had MG for almost 12 years and also gastroparesis I take domperidone you can’t get it here in USA but Canada I’ve been on it for 5 or 6 years I take it ten minutes before you eat 3 times a day it helps a lot sometimes I forget to take it and then my stomach will hurt so I take it and about 15 mins later the pain is gone I won’t leave home without it works great for me!

    • paul spychalski

      Member
      November 1, 2024 at 2:43 pm

      Do you have dizziness also? TIA

  • TheresaG

    Member
    October 30, 2024 at 3:15 pm

    I just want to input how mine went. I became symptomatic in 2013. In 2024 I had a 4 foot resection of small intestine due to another rare cancer. Carcinoid, aka Neuroendocrine cancer.

    When I healed from the surgery 4-6 weeks later MG became my new friend. Hit me like a ton of bricks. Up at 8, take shower, back in bed by 11. Absolutely no strength. No appetite, and like you describe, could not swallow and eat. I lived on baked potato, soup, ice cream, protein drinks, steamed carrots.

    Of course I and all the doctors in So. Ca. Thought it was due to recurrence of cancer. I literally ran from one doctor to anther at all major medical centers. Multiple cardiologists, pulmonologists, endocrinologist, rheumatologists, neurologist, gastroenterologists, neuro opthamologist, even had one cardio put me into rehab due to the shortness of breath. OMG. I finally ended up at UCLA where a doctor that treated me for my cancer follow up scans sent me to their rheumatologist. By 2017 I was ready to try anything. I had to retire from my own business, so was pretty upset. Anyway, after a bout with my back took a prednisone pack. OMG, I could walk, talk and function, some. The rheumatologist upon my pleading put me on 5 mg prednisone. Told him I’ll tak a little life than in bed forever. Fast forward to 2020. I saw a neuro who did the SFEMG, put me on 20 mg prednisone and mestinon, to which I responded well. I then moved to Arizona and saw a Dr. Muley. We did IVIG first and now have been on vyvgart for 2.5 years. Moral of the story is when the disease is managed well, things like gastroparesis and SIBO, which i was dx’d for both in my search, will dissipate. I lost 35 pounds early on. I was actually anemic, BMI 19.5. Today thanks to prednisone I have a BMI of 25.5.

    Find a good doctor who will get you the needed treatment and life can be better. Not perfect, and I have bad days, but I feel good 70-80% of the time.

    Sorry for the rabbit hole. Hope it helps someone.

     

    • paul spychalski

      Member
      November 1, 2024 at 2:45 pm

      I get gas and bloating after I take 60mg Pyridostigmime, what to take before it or after it. TIA

  • Kevin Hillock

    Member
    October 30, 2024 at 4:33 pm

    First you need to talk with your doctor. I would never ask a group of people what to do about symptoms I have for a disease.

  • Ron

    Member
    October 31, 2024 at 1:08 pm

    Hi Liz,

    I’m really sorry you’re dealing with these problems. My spouse has MG and she’s been on Cellcept and IVIG for about 4 years. She’s been symptom free for most of this time and she will soon find out from her neurologist if she can completely stop the IVIG that she’s most recently been having every 8 weeks and just stay on the Cellcept, 1000mg twice daily. Recently she had a barium swallow which showed a possible obstruction at the Lower Esophageal Sphincter. She had this test because occasionally she feels the sensation of food moving down her esophagus–especially when eating fresh apples– but the food isn’t getting stuck. She’s now scheduled for an upper endoscopy to rule out cancer, etc. Some reading I’ve done indicates that MG can have various effects on the esophagus and I would like to hear from anyone who may have symptoms similar to the one described here. Also, I would like to hear from anyone that has stopped IVIG and is just on Cellcept or another medicine and is staying symptom free. Thanks and I hope everyone has a good day!

    Ron

    • DRM

      Member
      November 9, 2024 at 2:34 pm

      Hi Ron, My Dad deals with swallowing issues from MG too. Softer food and turning head to one side when swallowing helps. IVIG infusions started two years ago and about to start Ceptcell. I am not finding much information on the MG and Ceptcell connection for treatment, any sites or studies you have found would be very helpful.

  • Amy Cessina

    Member
    November 8, 2024 at 4:21 pm

    Doesn’t cellcept and immunosuppressants increase the risk of cancer? That’s why doctors keeping you on them indefinitely if not needed can be dangerous. Be your own advocate.

  • Ron

    Member
    November 15, 2024 at 2:38 pm

    DRM:

    Hi and thanks for your response. I’m not aware of any useful info about either IVIG or Cellcept but now my I’m wondering about both. Just recently my spouse who has MG was diagnosed with esophageal cancer at the GEJ junction. This is what is causing the swallowing issue I had mentioned. Because she doesn’t have the usual reasons for this diagnosis we’re now wondering if the Cellcept or IVIG could be the cause. Her Neurologist didn’t think so but said he may have other MG patients with cancer.We’re hoping this cancer can be surgically removed and hasn’t metastasized but won’t know until after more tests.I hope I’m wrong about these two MG treatments.

  • Ari Maayan

    Member
    November 15, 2024 at 3:43 pm

    This is for Liz and also for Theresa.

    Many years ago, long before I ever heard of MG, I was diagnosed with stage 4 Adenocarcinoma. I had a 19 1/2 hour surgery during which I had the bottom half of my esophagus and the top half of my stomach removed and they did a gastric pull through to connect the two. Then they detached the vagus nerve from my gastrointestinal system and did a pyloroplasty which opened up my pylorus valve so that I would have a gravity feed system, since the vagus nerve had been detached from my gastrointestinal system. Then they did a resection of about a dozen lymph nodes , resection of my spleen, gallbladder, right kidney, partial resection of my right lung after removing the fifth rib on the right side you saw that they could get the rib spreaders in to get to my right lung.

    After this, I lost 100 pounds. I came to live with my new self slowly and painfully. Fast forward many years, about eight years ago I was diagnosed with. gMG and oMG. SO MY MG HAS TO LIVE WITH MY REARRANGED ORGANS IN MY CHEST CAVITY AND MY ABDOMINAL CAVITY. Then five years ago had open heart surgery. The surgeon decided that while he was in there, he might as well remove my thymus. So he did, unfortunately, I did not have a thymoma, so there was no curative event from removing thymus. I have regained the hundred pounds And it was a good thing that I regained it before MG. Because now like many others I can eat only small amounts of food. I bought one of those little roasted chickens today at Whole Foods. You know there are nowhere near the size of the roasted chickens at Costco. I was able to eat one drumstick and the thigh to go with it. Absolutely stuffed. That was about five of hours ago and I haven’t been able to eat anything since. So the weight is coming off again. Well enough of this odyssey. God bless you all.

  • Ron

    Member
    November 19, 2024 at 10:40 am

    Ari

    Thank you for your reply. I’m so sorry you’ve had these very difficult medical issues to deal with.I really admire your strength and determination and I wish all the best for you and that you have no more serious medical or other issues.

    Regards,

    Ron

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