View Poll Results: Tummy troubles and MS (multiple choice allowed)
I have tummy troubles in or out of flare. MD said not related to MS. 3 37.50%
I have tummy troubles in or out of flare. MD said not related to MS.
3 37.50%
I have tummy trouble in or out of flare and didnt report it to MD. It cant be related, can it? 5 62.50%
I have tummy trouble in or out of flare and didnt report it to MD. It cant be related, can it?
5 62.50%
My tummy seems much worse around a flare, but MD said not MS 0 0%
My tummy seems much worse around a flare, but MD said not MS
0 0%
My tummy is much worse around a flare, but I didnt report it to MD. 0 0%
My tummy is much worse around a flare, but I didnt report it to MD.
0 0%
Multiple Choice Poll. Voters: 8. You may not vote on this poll

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Old 03-08-2011, 05:18 PM #1
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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?
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Old 03-08-2011, 06:20 PM #2
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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.
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Old 03-08-2011, 07:35 PM #3
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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)
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Old 03-09-2011, 08:40 AM #4
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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.
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Old 03-10-2011, 11:15 PM #5
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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.
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Old 03-25-2011, 10:44 PM #6
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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?
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Old 03-26-2011, 07:42 AM #7
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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.
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