Digestive symptoms

[DanaJ]

My symptoms all started, or what I could see, was digestive problems. After every test my GI dr could do, and nothing showed up, he ordered a brain MRI. It showed lesions. He immediately referred me to Emory in Atlanta which is 5 hours away. I’ve received the best of care there. Since then I’ve had all kinds of crazy symptoms for that I now can identify as MS. Has anyone else had major digestive problems? My GI dr here said he’s never seen my problem, with no explanation, until I was diagnosed. I was just written in stone diagnosed in April 2021 after a spinal tap. But suspected for about 5 months. Is crazy is all I can say.

[greaterexp]

I've had IBS and migraines for years, long before my MS was diagnosed. Now it seems there may be some sort of link, though more so for what are thought to be autoimmune disorders. What kind of digestive symptoms have you had?

[DanaJ in reply to greaterexp]

It started out with uncontrollable diarrhea. To the point of wearing depends. Bad stomach pain, but then back to constipation. I diagnosed myself for about 4 years with IBS and anxiety. Also the MS has affected my pelvic floor to the point that the nerves and muscles are extremely weak. I have a consult at Emory in June 22 for surgery for that. It’s been a rough 8 months.

[greaterexp in reply to DanaJ]

I'm sorry you've had so many issues. I hope the surgery takes care of the problem for you.

[DanaJ in reply to greaterexp]

Thank you! When were you diagnosed?

[greaterexp in reply to DanaJ]

About four years ago.

[palomino27 in reply to DanaJ]

I have Small Nerve Fiber Nueropathy along with PPMS. My SNFN is caused by different Autoimmune conditions that also cause dysautonomia and P.O.T.S.. It affects my stomach greatly. Whenever I eat it refers discomfort, pain and fatigue elsewhere in my body until I'm done digesting. I had a skin biopsy done in 2015 below my knee that showed it. Usually it's a length dependent condition meaning more severe from the feet on up but mine was splotchy. Meaning in random spots all over. The most small nerve fibers are in your stomach so we assume I have it there to by my symptoms. Their is no test to confirm it in one's stomach yet. It affects my daily life more then the MS I'd say...i compare it to throwing acid on the MS😕 very inflammatory condition

[Cutefreckles72]

Hi, I am a Emory patient also. Emory hospitals are the best in Atlanta, GA. I don't have a IBS problem but I do have a problem digesting food. My pancreas does not make enough enzymes to digest my food so before each meal I have to take two CREON pills to get my food to digest. And this problem started after I was diagnosed with MS and becoming cancer free after Colon cancer.

[DanaJ in reply to Cutefreckles72]

Sorry to hear you have a lot going on also. My neurologist and GI drs are both at Emory. I live in a small town in GA so I don’t mine the 5 hour drive. I would advise anyone to go to Emory.

[Cutefreckles72 in reply to DanaJ]

I agree. I live in Atlanta and Emory has been helpful to me. All of my Doctors are at Emory also.

[kdali]

Yes, it started when I was a kid and only recently got sorted when I stopped eating fiber. Who knew 🤷‍♀️

[DanaJ]

I was told to do more fiber. It’s all confusing and crazy to me.

[kdali in reply to DanaJ]

Exactly. I was averaging 70 grams per day for a year, no difference.

[goatgal in reply to kdali]

The advice to eat more fiber is often given out without putting much thought/analysis into how a patient may already be eating. So those of us who already consume more than ordinary amounts of fiber in fresh vegetables and fruits are treated as if our every meal was from a fast food franchise.

[kdali in reply to goatgal]

I wish I had realized that a long time ago! I believe you are correct, no one passing out dietary advice has ever asked what I eat or how often.

[goatgal]

I've had IBS for most of my life, starting in my teens. My daughter suffers more than I; it started when she was in her late teens.

[Goldilockssearching]

Yeppers!! My life since 18, requiring a leave of absence from college/numerous GI appts leading no where really/abdominal surgery @ 19 (consequential bc didn’t “help” the issues at hand) I truly believe the issues are all MS related bc it’s the only thing that ties everything together logically.I think my very first active MS issue was headaches in early teens, then the digestive issues probably resulting from acquiring lesions in those areas. Multiple other things here & there all the way thru that I can now say were definitely MS related. Wasn’t dx w MS until 41. Neuro said based on MRI “yeah, you’ve had this for a long time”. She doesn’t list my prior ibs dx bc she said it’s basically a GI catch all for “I don’t know”=probably the MS.

Still struggle w it pretty much everyday as there really isn’t anything to fix it-just another sucky thing to treat symptoms & learn to live with.

[Jmhnath]

Oh no! I was diagnosed with IBS (constipation) 1-2 years after my MS diagnosis in 2012. My constipation and bloating have worsened since then. While not the only factors, I've found that stress and anxiety have a significant impact on my bowel movements.

I was lucky to see a neurogastroenterologist about my constipation. Because of her background in neurology, she could offer more useful advice than a gastroenterologist. It took several months and a referral from my neurologist to get an appointment, but it was worth it.

Gastrointestinal issues are the worst. I hope you find something that works for you!

[leking1]

I was dx with RRMS in 1981, I think, may have been 1982. I've had IBS issues since my teens. and was dx with Crohns in the late 80's. Still deal with it, and nothing seems to help. MS is now SPMS, but diarrhea is what it is, no matter what causes it, IBS, Crohns, or MS...they are all a part of my everyday life, so I've learned to live with the little devils! I have learned where the public restrooms are everywhere I have ever been!

[Jer29-11]

I’m sorry to hear about your MS diagnosis and GI troubles. And yes, I’ve had GI issues since childhood. My symptoms were severe nausea/vomiting, sulfery burps 🤢 and stomach pains. They would be intermittent over the years, but would hit suddenly and I could never pinpoint what caused it. Went to the Dr several times and was told it was gastric reflux. Finally went to a GI dr in my mid 20s after I was on the couch for 24hrs severely nauseated. After an endoscope and a million tests, he said inflammation, but who knows what’s causing it. I was diagnosed with RRMS 8 years later. I have no idea why, but my GI symptoms went away during pregnancy (before MS diagnosis) and have not returned. My daughter will be 3 next month 🤷‍♀️. MS is weird!

[DanaJ in reply to Jer29-11]

You’re telling me!!! I love your username! I know the plans......one of my favorite verses. It’s all crazy! I’m so new at this and don’t understand a lot. I don’t do a lot of reading about it because it’s frustrating how everyone is different and it’s not easily pinpointed. I’m just having a rant day when I need to be spending more time in prayer.

[Jer29-11 in reply to DanaJ]

Thanks!! I get it about reading up on things. I’m still in the same boat and get overwhelmed by all the different symptoms and alternative medicine options. I do believe diet has also greatly helped my GI symptoms. I did a strict no gluten, diary, eggs and sugar, along with upping veggie intake and probiotics for 6-7months. Still doing that but trying to enjoy some “off limits” foods. Overall, what helps the most is my faith! When I was first diagnosed, a doctor friend kept telling me Jer 29:11 and I have to remind myself of it daily. This disease is so unpredictable, but our God is not. He will guide and take care of us through it all. Blessings!

[DanaJ in reply to Jer29-11]

I agree! I’m having to walk by faith for sure.

[CrazyCatWom]

First, welcome to the world of MS weirdness! As for digestive prblems, I have gastroparisis. If I was in Mid School, I'd win belching contests. But I'm 54. and sick to death f belching one after another so much I dang near pass out! The food I eat stays in my belly so long it ferments like I'm trying to distill moon shine! My abdoment swells so much I feel like a kid's balloon that one more blow, I'd pop!

[DanaJ in reply to CrazyCatWom]

My sister has that and takes a medicine after each meal that helps her stomach empty. It has helped tremendously. Sorry for your problems.

[rideabike in reply to CrazyCatWom]

I have gastroparesis too although no one has explained it in such detail better than you though....🤣 No MS dx yet but the ball is now rolling. This thread interests me bc of similarities. GI issues started young and progressed. My mother used to shake her head at all the things I couldn't eat.

Went on a special diet for thyroid cancer and felt better afterwards but remained gluten free. Candida overgrowth....when gone....other symptoms improved as well but never completely. Took probiotics off and on after SIBO (small intestine bacteria overload) which can cause a lot of the same symptoms as you have.

Now have to eat smaller meals, more greens, less sugar, no yeast bread (sourdough w/o yeast is OK) but still swell up and look pregnant after a small meal. MS hug is the only explanation I've read for the stiffness in my torso for about 4 years and worse after eating. Now I have trouble breathing due to muscles there.

My father was big on gardening and spraying vegetables with pesticides, fungicides....you name it...if it killed bugs he used it. It started from the time we were sprayed with DDT as little children, and the cottage (while under the covers), for mosquitos. Link??

[mrsmike9]

I have colagenous colitis, another "lovely" autoimmune disease. NOT.

[DebbyCorn]

My son also had all sorts of digestive issues and no tests showed anything conclusive as far as his digestive system. He has since taken some intense probiotics from a natural doctor as well as sat in an infrared sauna daily to get metals out of his system. His digestive issues finally resolved. When he was initially diagnosed with MS some of the doctors also believed his stomach issues could be linked to it but so far no answers.

[DanaJ]

My GI dr seems to believe it’s all related.

[anaishunter]

Interesting post and discussion. I had minor GI problems my entire life, that I put on stress. I must say that most are under control now that I've drastically controlled my diet for ms (mostly plant-based + fish, and very careful to only put MS-friendly nutrient in my body).

I've always wondered whether our lesions and their placement in the brain could give us an indication of the types of ms symptoms we should expect. My neuro did not have any conclusive comments on that.

[DanaJ in reply to anaishunter]

My neurologist and GI are working together to try to find out if it is all MS. I actually have a zoom meeting at 9 this morning with neurologist. I’m hoping for some clarification on some things.

[Frances_B]

Sounds like you've had a pretty rough time for a while. Did your GI doctor talk to you about FODMAPS? Is the pelvic surgery the mesh one?