MS and Tummy troubles?
 

saw the gastro guy yesterday and once again they are tagging my tummy troubles to MS. I have gastroparesis or a stopped stomach. I am told its rare to have MS related tummy trouble, but I am starting to think that its one of two problems. 1. most MS patients are not reporting their tummy trouble because they themselves think their MD isnt going to connect the tummy to MS, or 2. they are reporting it but their MD isnt listening or dismissing their sx as belonging to another disease.

Do you have tummy trouble? Tell me. Help me connect some dots.

I have suffered with IBS my whole life. As a little girl, about 10 yrs old, I would, like every two weeks, have bouts of severe abdominal cramps, followed by explosive diarrhea and vomiting.....it has reduced in frequency during my adult life. I now have severe constipation, and once a month bouts of the severe abdominal cramps/diarrhea, I rarely vomit any more.

I was dx with IBS when I was 19, and with MS when I was 46......do you think they are related??

We had a whole thread on constipation a few months back. it turned out most of us have had constipation and we have all related it to our MS. It turns out the questionairre at my MS MD includes it as a sx now.

The territory I find myself in is new for the MDs to admit is "may" be part of the whole MS cycle. The MD himself wonders how many MS folks are not reporting it, so it isnt included, or how many patients are being dismissed.

Is your tummy worse around a flare? I would tell your MS MD if so. it just may be a rare presentation of early MS when you were 19.

If I eat certain things it creates havoc within my tummy. High fructose corn syrup is one thing that really gets me. If I eliminate that one thing it makes a world of difference. Problem is, HFCS is in so many things! It's really difficult sometimes to find things that don't contain it. I've pretty much resorted to eating whole foods....nothing processed. It does limit my choices but my overall health is better because of it. Plus, I've lost weight! :)

No abnormal tummy troubles here. TG:)

not tummy, but colon. paradoxical puborectalis. the worst of my sx. and 'roids from hell that bleed

I have had stomach problems since I was 5 or 6, in hospital twice. Anytime I would get least bit nervous, like dancing lessons next day, would be up all night vomiting and diarrhea, all night long. DX as spastic colon back then. Had problems all my life. Dr's call it IBS now. Not sure when MS started, so not sure it had anything to do with it. Is IBS autoimmune? Had Hishimoto thyroiditis, when had tumor on thyroid, in 2005, another autoimmune? Not sure ...

I did not vote as the choices did not seem to describe my problems. I have tummy/colon problems all of the time, and doctors say it is probably MS related. Take nexium for GERD and Miralax almost every night for colon issues. In particular, issues with constipation and stomach cramps may be related to MS, plus medications.

Dej - As you know, this past flare has caused colon troubles for me that I have never had before. Not too sure if it was MS or the increase in gabapentin but it still is going on to some extent. I never knew constipation could hurt so much. And, as you know, I played around with my diet and have found some things that work for me and has been helping. When I don't eat Yoplait yogurt and my canned pears, I'm back to having difficulty. I don't know why that combination is working for me. I have tried other yogurts with no success. It must be that Yoplait has the exact amount of good bacteria that I need. The canned pears, I have no clue why they work better for me than fresh pears.:confused: (Maybe it's the HFCS that Kelly is talking about and if it is, then I'm ok with that.;))

I have had constipation caused by rectal muscles and wouldn't feel the urge to go and became a little incontinent. :o That eventually resolved and I have been fine for years. It wasn't painful like my recent episode.

Speaking of difficulty, I think most people think of constipation as not going at all, having hard or pellet like stools, etc. when in fact difficulty moving the bowels is also considered constipation. This may be why people don't report it to their MD. For me, it is difficulty moving the bowels. They seem to be lazy and I have to just sit and wait. It's like something in my circuitry is not communicating properly - the brain is told it's time to go, bowel/colon gets ready, and the bowel/colon isn't getting the message or something like that.

When you find your magic bullet, let us know as I think sharing like this is so helpful. In the meantime, big :hug:'s.

BTW - I didn't vote as my option wasn't there. I did report it to my PCP but she wasn't too sure if it was the MS or something else and referred me to a gastro.

Had various digestive problems since I was little...GERD, constipation, IBS, etc.
I've had constipation issues since October. One doc says take citrucel, another says take Benefiber. Neuro says eat right...lots of raw food.
I sat for over an hour last week...my intestines are on vacation, I believe...wish they'd taken me with them...;)

I don't bother to talk to the neuro about it because he gets kind of snippy..."I TOLD you you need to stop taking those fiber meds...and eat whole grains, fruits, veggies, nuts." Yadda, yadda...

I was dx'd in 2009 with gastroparesis. My neuro simply referred me to the gastro guy when I mentioned my sx to her. The gastro had no idea if it could be MS related or not, but he also told me he didn't have any pts with MS. The condition is apparently unusual in someone who doesn't have diabetes. He said as well that it is incurable.

When I was first dx'd I was skin and bones because of the gastroparesis. My biggest complaint had been nausea, and feeling full after only a few bites. I asked about it here; whether anyone thought this was MS related, and several chimed in on their own stomach ailments, but none with gastroparesis.

I had no flares at the end of 2009 or 2010, so I would say it was its own flare if that's what you want to call it. It was my only physical complaint that year.

I still have stomach issues (bouts of nausea, etc.), but not I don't believe it is complete stomach shutdown since in the year since my dx, my sx steadily improved, I've gained back all the weight (and then some -- LOL) and I am generally able to eat normally much of the time.

Has anyone actually gotten steroids for digestive problems related to MS?

I have Gastroparesis and I have MS. It seems now that the MS folks and the GI folks are holding hands and playing nice, and telling me that YES, gastroparesis while normally considered a diabetic issue can most certainly be from MS.

Steroids in the past have made it better. My Gastro issues are not constant and come and go with my flares. Diabetic patients with this have it constantly, so they were scratching their heads when I popped up with sporatic GP disease. After several years of testing it has been declared by my MD to be an MS thing. Whodda thunk it?!

My tummy has been out of whack since I was a teenager, so I am wondering if I had MS sx way back when. STranger things have happened I guess.

I didn't choose any of thoses selections because none of them fitted, but I have had tummy involvement, and my Neuro said my symptoms were definitely caused by MS.

In my last major flare the nerves controlling the motility/peristalsis of my bowel were directly affected. Technically I had a bowel obstruction although there was nothing there to do the blocking.

Bowel obstructions are fairly common postoperative complications of bowel surgery (I had another one after my hemicolectomy), but with surgery it's the small bowel, or ileus, that's affected. During my flare it was the large bowel that wouldn't work, and the neuro told me my symptoms were definitely caused by MS.

Unfortunately my bladder was also affected at this time and I had to start self catheterisation. I shouldn't have been too surprised because the same areas of the spinal cord serve both the bladder and the large bowel.(L1 - L3)

Thank you for all the responses, even if you didnt answer the poll. Guess I should pick better questions huh? lol. Years ago when I really struggled with tummy issues I had so many blame it on stress, or diet, or lifestyle, or virus' and when I would show them my diet diary, they said "oh!" and then I asked why if I am stressed EVERY day, why does this only happen now and again? nothing changed but the tummy and oh yea my feet are tingly. My lifestyle? omg! are you kidding? I go to work, I come home. We are not bar flies, nor are we world travelers. and how many virus' can I have that are exactly the same each time? Follow the same pattern and then relieve itself? So, many chalked me up to a stress head. it was maddening to know something else was going on and to not be taken seriously.

While it has taken literally decades to get someone to start connecting the dots, the answer just feels right. it makes sense, it follows the proper pattern. If it was just stress, it would have been relieved by stress interventions or would have gone away completely with my retirement from my job (which I loved)

Isnt it funny how you just know that what you are being told doesnt fit? even if its by an expert or someone really smart about these things. You listen for awhile and hope for the magic words, but when you leave their office you shake your head saying "he didnt understand"

Thanks for listening. :grouphug:

In my experience (long) gastroparesis comes from a neuropathy. In other words, a nerve or nerves controlling motility in the gut is harmed. I am amazed that there is even a discussion of whether it occurs in MS. It does. I did not know it occurred in diabetes, but it makes sense if neuropathy is a common thing in diabetes, and I recently learned that it was, when I had foot neuropathy from a different cause (not diabetes). In Porphyria, my second dx'd disease after MS, it is very common.

I have always thought that this was the primary difference in broad symptomology between MS and Porphyria. Most MS patients seem to have considerably less abdominal pain than most Porphs. I had terrible abdominal pain for many years from 17 on, which would come and go, but was there frequently. I tried everything, and no one dx'd the cause. I of course spent years going to psychiatrists, without a lot of help, although I learned a few things from group therapy, most of them only peripherally related to my abdominal pain. I think group therapy was more effective for me than psychiatry, in every case. But did not help abdominal pain.

When I got through menopause my ab pain improved somewhat. This was probably because estrogen departed, which is a high trigger for porphyria. But the real big improvement came when I got of Porph-unsafe drugs and foods and tried to avoid environmental triggers that I didn't even know were triggers in my early life...there are many many many.

I had Obstipation several times in my earlier years (which I think was due to gastroparesis). Hard to fix but extreme medical effort would succeed. I have heard of MS patients dying of Gastroparesis, and I didn't. But sometimes felt like I would like to.

In later years, rarely Obstipation, but had it last Fall after traveling and not eating right,
and had to go to ER, where my intestinal block was remedied with an oil enema (it was
like labor getting rid of that).

I too think canned pears is an ideal remedy for constipation, but I rarely have consiptation now because I take enough magnesium.

I am currently IN a flare, and 99% of the time I have been able to track "belly pain" to my flares. I am kinda vocal and have brought it up to many many many MDs who did many many many tests and none were able or willing to pin it to MS. The big girl hospital/medical center up in the north really researched it, and tracked down MDs of other patients that have the same sx as I do. He clearly and definitavely said "its MS" you are not crazy, you are not whining, you are not lazy, you are not sensitive, or looking for excuses for drugs, you have MS and yours has affected your gut." All my porph tests have come up negative, even tho many many many of my sx fit it too. I almost feel that porph makes more sense, but if you allow my MS to have a tummy component you can bring them to about level to each other.

Canned pears is on my shopping list, but I am searching for ones without high fructose corn syrup. I think Dole sells a natrual sugar or juice blended one.

I have severe IBS with numerous loose bowel movements every day. This has been going on for about 18 years. I just figured out that it coincides with my diet soft drink addiction. :rolleyes:

I never touched the stuff until I joined Weight Watchers, back then they really advocated using sugar substitutes. I'm trying to kick the habit right now. This is first cold turkey day and I'm so nauseated. I don’t understand how a soft drink could make me feel like this :confused:.

I really, really hope that quitting the aspartame habit will make me better. I even wake up a couple of times during the night to go. It sure doesn't help with the fatigue.

I never told my doctor about my nearly 2 liter a day habit. He thinks it could be MS related or just plain old IBS.

This paper was just published on The Gluten File, on Facebook.

I thought it might be useful on this thread.
http://www.ncbi.nlm.nih.gov/pubmed/21385364

It concerns the incidence of gluten intolerance in MS patients...which is :

OK, now I'm having a little tummy trouble, while on an AB..:mad: :)

That is very common sal. ABX will tear my stomach up. I find yogurt is very helpful. ABX kill bacteria. it doesnt care if its good or bad. Anti=against biotic-life or PRO=For biotic=life is what yogurts are. Make sure you read the label and get LIVE cultures.

My tummy is soooo not happy right now. :(

Hang in there. You'll be amazed at how much better you will feel once the aspartame is out of your system. It will get better but you'll probably be pretty miserable for a couple of days while it exits your body.

I've been looking for a good Stevia product and have finally found one. It's called KAL Pure Stevia Extract. Here's a link where you can purchase it: http://www.amazon.com/KAL-Stevia-Ext.../dp/B00014J2UO. It is the only Stevia product I have found that doesn't leave a bitter aftertaste and sweetens just like sugar. I love it. You only use a tiny bit (there is a teeny-tiny scoop in the container) so it lasts forever.

Good luck coming off the diet drinks. You will be so glad you did. :)

Its amazing what happens when you add chemicals to your body. Sugar free stuff give so many of us with MS bad headaches. Be patient with yourself while your body detoxes. I am so proud of you for figureing it out. :hug:

Joelle - :hug::hug: Good luck! I hope it works well for you and your tummy as well as everything else starts to feel better soon.

mrsD - Thanks for the link. That is rather interesting. Of course, I have heard many times over that most diseases start in the gut. So it makes sense to me to do what you can to keep a healthy gut. I limit my gluten as I found that some things really bother my stomach, like pretzels. And I love pretzels.:(

Mariel - So true on the canned pears. I don't know what it is. The only thing I could think of is that they are soft and easier to digest than fresh pears. Canned pears have become my new friend and a staple in this house.

How are you doing today Dej?

I wanted to know what are the symptoms of MS? I have pernicious Anemia...with constipation and have to take align, which is a probiotic to rid my body of the bad bacteria in tummy and intestines.

Most importantly, I am getting pain in my upper arms...light shooting nerve pain, in my fingers, in my legs...but I caught a cold...a virus.....! I do have cervical herniated disk, and 2 lumbar herniated disks. I experience lights in my eyes which distort my vision so I close my eyes to let them fade. I get pain on the crown of my head and doctor has said my spine is going through muscle spasms...and I don't know why? I get pain in the lower back of my head and then feel stabbing pain to the crown of my head....I don't know how long I can deal with this as I have been living with it for 12 years now ever since I had colarbone surgery. 2 weeks after the surgery, I started to get the pain on the crown of the head. When I came home from the hospital with my arm in a sling, I went to lie down on my recliner and started to cry. My daughter asked me what was wrong and I told her my brain was telling me to lift my head, but I couldn't move it. I told my daughter to cup her hand under my head so that I could lift it. I think I injured my neck when I fell off my bicycle onto the pavement.

I also get blurry vision when I get the pain on the crown of my head. When I don't have the pain....it's not blurry!

Last month, I drove myself to the gastro doc to get a B12 shot and I don't know how I got there because I seriously was not feeling well. The pain on my head was so bad and then I felt like my chest was going numb and felt like I was going to die. I had the nurse take my blood pressure and it was 146 over 79.

My regular doc is in denial that I have pernicious anemia and doesn't think my symptoms are related to the low B12 at the end of the month. He's telling me it could be fibromyalgia which I was diagnosed with, but not all of this is fibromyalgia, especially the pain I get in my upper right arm...(feels like nerve pain) as my arm is leaning forward slightly and healed incorrectly when the colarbone was healing. He was telling my husband for me to go on antidepressants and I was there and did that and would not consider it as I had problems with paxil. I believe my arms is pulling my neck and my thoracic causing spasms and nerve throbbing. Docs say they wouldn't consider rebreaking the colarbone at my age.

I've been taking muscle relaxants that help but I can't be on those the rest of my life, I guess? I've been told since I have pernicious anemia that there is an autoimmune disease lurking in my body, but which one is the question?

I don't know what to do as the pain in my head is terrible and I have to lie down on my back to stop the throbbing in my spine. I can't seem to function very well because of this!

Does anyone have an suggestions?

Oh Happy, it breaks my heart to hear you in such pain. For many of us MS was a process to be diagnosed. it wasnt something instant where we walked into the MD office, and were told "oh its only MS" Many of us were a mess for years while we were dismissed and told its stress, or depression or some of us were even told we were making stuff up to get out of work, or pill seeking.

Do you think you have MS? is that why you sought out an MS message board? Several of us have MS and other issues.

If you feel your MD is dismissive, and not listening to you please seek a new one. I am sure there are MS centers in your area. Please seek one out. Have your MD set up the appointment for you. They will do a whole battery of tests, and have you do MRIs, blood work, physical exams, and a complete history. They will talk about family history, and your own history.

MS is a disease of having things ruled out. Generally there are more than 100 diseases that can mimic MS including the brain lesions, and symptoms. This includes, but isnt limited to vitamin def, lupus, lyme, sjoghrens, and fibromyalgia. The MDs will take what can be ruled out with blood work, and do that. What can be ruled out with physical exams and do that. Take what can be ruled out with MRIs and do that. In the end they will be left with a handful of diseases that cannot be proven, but must be determined by what is left. MS is one of those that doesnt have a blood test that tags it. Its best to have the big boys do the work up.

Many regular MDs dont see some of these rarer diseases come thru their doors, and when they do, quite frequently dont know what to do with them. Since its more likely than not to be a normal headache, and not a migraine they will jump their first. Please see a rhuemetologist and an MS center. Between the two, they should be able to put you on the road to better health.