Probably has nothing to do with MS..but really need some advice on this one...

[MostlyShell]

I ran this post through Undiagnosed..but no reply...thought maybe since all of you have been through the ringer like me, every doc and test out there...maybe one of you might know....or be able to help! Thanks!!!

I usually post on the MS forum but I'm pretty sure this doesn't have anything to do with that. Only aggravating it.

Run down on my diagnoses. Multiple Sclerosis-progressive, Ehler's Danlos Syndrome III, diabetes type 2 (diet controlled).

My stomach issues began in November. Got to where I couldn't eat anything. Gastro specialist did endoscopy in Feb. and found inflamed stomach, took samples, but no findings.  I have found that I can eat dairy pretty well but anything else leaves me suffering for about a day and a half. Just bloated and really upset stomach. Pepcid does ease it some and other medicine he gave me but, not totally. Have had pneumonia twice since November, stress level was extremely high due to moving, money, etc. Had to have steroid drip in late November.

In the last few weeks, my hands and feet have been swelling, like noticeably when I get out of bed. Have to take rings off. I don't have a high sodium diet. And have ruled out a few other things.

Just curious if any of this goes together or if it's separate? Wondering which person to go see...neurologist, rheumatologist, keep seeing my gastro guy?  

Any answers would be very helpful and appreciated so much...oh, and I'm not pregnant...

Thanks,
MostlyShell

[MostlyShell]

"I have met and heard about way too many people (self included) who have some combination of diagnoses including at least 3 or 4 of the following: GERD, hypoglycemia, gastroparesis, heart palpatations, irritable bowel, RLS, sleep abnormalities.  I believe there has to be some common factor that is causing this type of clustering of disease processes.  I'm not sure how it is that doctors either haven't noticed or choose to ignore these patterns in their patients daily struggles to lead healthy lives."

Mary,
I have all of the above. and have looked and been to so many doctors it's pathetic about each and every one of them since age 21.
My problem with the stomach is just in the stomach itself. I remember when I first started getting the heart palpitations when I was 21. See, it never happened when I was hooked up to a machine so docs couldn't see. So, i never made a huge issue. But, last November when I was going through probably the largest amount of stress in a long time, I brought it up because I wanted to see the cardio guy. Doc hooked me up to his EKG, and sent me home with anti-anxiety pills.
My neuro does, however, believe and does test my ANS every year. Says it's off. She has given me sleep tests that showed I have mild  sleep apnea. But, that test correlates with lesions in the pons. (I think I'm remembering her wording correctly there). And the fact that I got yet another lesion on my brain stem and other pertinent areas convinces her and me that MS very much can wreck havoc on one's ANS.
Yet, like you say, I never, until now, have heard any other MS'er say anything about it.
Thank you.
Really, thank you alot. I was beginning to question this neuro too, but I have always been convinced she knew what she was talking about....
I love this group!!!!   =)

[twopack]

Is your bloating and pain in your stomach area or the gut too?  Gastroparesis sounds like a good possibility but eople with EDS are prone to irritable bowel too.  I think it's very interesting that you can eat dairy but not other things.  Seems opposite to what many people report.

I think this is the type of symptoms that prompted Quix's question about MS and the autonomic nervous system.  There is also a topic in the GI forum with tons of people who believe the vagus nerve is playing a key role in their stomach, intestional and heat problems.

I have met and heard about way too many people (self included) who have some combination of diagnoses including at least 3 or 4 of the following: GERD, hypoglycemia, gastroparesis, heart palpatations, irritable bowel, RLS, sleep abnormalities.  I believe there has to be some common factor that is causing this type of clustering of disease processes.  I'm not sure how it is that doctors either haven't noticed or choose to ignore these patterns in their patients daily struggles to lead healthy lives.

Sorry if I got side tracked here.  It seemed pertinent when I started.  I do hope you figure this out, or at least a way to make it work for you.

Mary

[MostlyShell]

Hmmmm?  Here's a question that I just thought of....

How many on here, that read this one, have had lower bowel problems?  I have diverticulosis (holes in intestine that could get blocked with food), and have suffered with colitis a time or two.

I have read that many with MS have it.  Maybe I'll poll this one.  Just out of curiosity.  But, I also read that many with Ehler's Danlos get it too due to the collagen breakdown. I do have the whole bladder dysfunction, constipated thing too and I know that is MS, just curious about the other.
Interesting.
You know, I kind of feel stupid but this actually helps because they did try to give me a medicine to help speed the food out of my stomach but it didn't mesh well with my anti-depressant.  I meant to call the nurse back and forgot all about it.
Thanks!!!

[steph74]

Did the gastro test you for celiac disease and take samples of your small intestine?  

Other issues could be gastroperesis (sp?) where transit time is slowed.  I have a friend who suffered *horribly* with this.  She found she could eat plain chicken or white rice.  This is all she ate for a very long time and she slowly started adding other foods in.  This type of sx could actually be MS related, I think.

Good luck and keep talking to the GI dr.

Stephanie

[jensequitur]

Well, it's not MS, but it might be auto-immune related.  I would talk to the gastro guy first.