Hi Ally,
My name is Sam and last night I came across your posting on Neurotalk and joined the platform soon thereafter. We have oddly similar symptoms and so my fingers are crossed that you are still active. I've never heard or read of anyone else suffering from the same gastrointestinal disfunction as me.
For the past 15+ years, I've suffered from extreme abdominal discomfort. After I eat (and it isn't necessarily related to volume), my stomach distends so much so that I look pregnant. It's painful, and causes me to go to the bathroom an average of 4 times per day. I'm nauseous and feel swollen and terribly uncomfortable a majority of the day. I've had every medical procedure under the sun -- colonoscopy, endoscopy, barostat exam, hydrogen breath tests, gastropareis exams, etc. -- but have yet to be diagnosed with anything. The last test showed that I have poor neuro control over my small intestine. I'm not entirely sure what that means, except that my small intestine spasms. The team of neuro-gastroenterologists that I see has put me on tons of medications, none of which have shown any positive results. And, as you can imagine, each of these drugs has a ton of side effects. I'm desperate for a fix and am thinking now that I should talk to my doctor about mestinon.
How are you feeling now?
Quote:
Originally Posted by bluesky
Hello Everyone,
I read a post by Nicky a few days ago where she mentioned intestinal paralysis and myasthenia gravis. Nicky, could you explain some more about this? You mentioned that you were familiar with some cases where people had both mg and intestinal problems.
The reason I ask is that I have had some gi problems which I have never found an answer for. Basically, I will bloat up until I look 9+ months pregnant. I have two photos of me which are quite dramatic: one with me huge (and I mean huge) at 11pm and one with me looking quite normal the next morning at 9 I seriously have been offered bus seats and had someone insist they carry my basket of books up to the cashier when I look like this! Lol. Like most of the symptoms I have it started out sporadically but now it's pretty much just continous. Except that when I went on mestinon I discovered it all disappeared after a couple of days. It was like a miracle - you can imagine how horrible it felt to be huge and giant and bloated. Not to give too much information, but the bloating was never associated with gas. I'm not sure whether the mestinon helps because it's just extreme abdominal weakness (my stomach goes way out after I eat, it's like I have no muscle tone to hold anything in), or if it has to do with the intestines working better. I am, how shall I say this, more productive when I'm on mestinon.
Also, I've never had any of the bad side effects of mestinon. It's like the mestinon is doing for my gi tract what it does for my muscles - just making it stronger and working better.
Does anyone have any insight into this? Nicky, can you shed any more light on this? I'm thinking of going to my gi and insisting on some sort of motility test. He's the type of doctor who has only one answer to fit all cases - I was told "you need to cut out dairy" several times even though I had cut out dairy to no avail and I don't have the usual gas/diarrhea symptoms. When I told him I got the same symptoms eating sushi he said, "there must have been some dairy in there". Uh, no there wasn't, I had the list of ingredients. Anyway, my point is I'm going to have to go and insist but I'm thinking that this needs to be investigated. Has anyone had any tests like this? What should I ask for? Because it's going to be a me asking rather than a him brainstorming type of situation.
Any help or wisdom on this would be appreciated! 
Ally |