[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

[mrsD]

Mestinon will move things along...

BUT...

Gas can come from other problems, and even people without MG can blow up like that!

Candida infections in the bowel will produce tons of gas when you eat anything sugary or high glycemic. Also, people who have dietary fructose intolerance will blow up like that.

So try this... cut out all sugar... all fruit, all high fructose corn syrup for 2 weeks. See how you feel then?

The main neurotransmitter in the GI tract is serotonin. But acetylcholine does work, during some actions.

Use of Beano for eating veggies...esp broccoli, cabbage, lentils, chick peas, is wise as you age.
Using lactase enzyme...the new Ultra forms can help with gas generated from dairy. There is a Lactaid milk with calcium that is very nice. (I use this).

But many people don't consider sugar... especially fructose.
http://en.wikipedia.org/wiki/Fructose_malabsorption

Fructose is absorbed in the small intestine without help of digestive enzymes. However, even in healthy people, only about 25-50 g of fructose per sitting can be absorbed. Persons with fructose malabsorption may absorb less than 25 g per sitting (amount is arbitrary determined according to investigation of fructose absorption is many individuals)[5].In the large intestine the unabsorbed fructose osmotically reduces the absorption of water and is metabolized by normal colonic bacteria to short chain fatty acids and the gases hydrogen, carbon dioxide and methane. The abnormal increase in hydrogen is detected with the hydrogen breath test.

I think some IBS patients are really fructose intolerant.
I discovered this myself, 2 yrs ago. My life has changed radically and for the better since I followed this elimination diet.

[Nicknerd]

Hi Ally,

I've had problems like this too....The summer before my speech issues, I went through a period where I was constipated for like 3+ weeks. I had to go to the hospital for an emergency enima. Not to be too graphic, but I'd be on the toilet all day, everyday, when I had the chance, trying to poo, praying to the good lord for a poo. lol...I laugh about it now, but at the time, it literally felt like my intestines were paralyzed, and it was terrifying, with everything else that was going on. I'd cry about it all the time- it was horrible...

I would push on my stomach with my hands, drink matamusil, eat fibre, but no luck. I even tried to 'go in' and get it out myself. Again, I know the imagery isn't pleasant, but just wanted to sorta paint a picture of how bad it was. Finally, after the enima, I had never been so happy to see poo in my life! lol...Of course, the doc. at the hospital didn't run any tests to figure out why this happened. It's not a good hospital, and even my neuro. and a friend of mine who's in the medical field said that if people go there, they can expect to die.

I smoke. I was not smoking during this time. I think that the nicotine helped me afterwards, as I didn't have as many episodes after this.

I've never been tested for anti-ganglionic achr, but I know I should be. Just too tired to go to the doc..

Anyway, here is something I came across. I had a thymoma, so it wouldn't be unheard of if I had these antibodies, but it does mention that some of the people with MG, without a thymoma, have disautonomia too...Also, people with Lambert Eaton syndrome tend to have it...

http://linkinghub.elsevier.com/retri...66070201002399

SOrry you're going through this...It sucks a lot!

P.S. I also have zero side-effects from mestinon...I will *occassionally* have a somewhat loose bm from time-release, but other than that, just some muscle twitching, heart palpitations, no GI problems, really...

[bluesky]

Thank you Mrs. D. I went back through what I wrote above and realized I didn't make it clear, but I do NOT have any gas problems. I can go from looking 9 months pregnant to back to normal without any, well, passing of gas at all. Very strange.

Anyway, thank you for taking the time to give me all that information!

Ally

[bluesky]

Wow! Great information, Nicky! I didn't even know there was an anti-ganglionic achr test. That is definitely something I'm going to ask for.

I was so sorry to read what you'd been through. It's so hard to get answers for our problems! In the meantime, you've really suffered with this. Thank you so much for sharing what you went through - sometimes our symptoms can get so personal. I haven't been as constipated as you are but I definitely haven't been moving things through. It's scary to look down at my gigantic belly and feel so full and think that I could be retaining this awful, toxic stuff in my body!

I read the abstract of the article you linked. Very interesting! I'm pretty sure I've had long episodes of dysautonomia. I'd stand and my heart rate would go up to 145 and stay there. That was accomonpanied by a lot of dizziness. Ugh, it was horrible and very debilitating and lasted for months. I'm going to have to figure out a way to get the full article. And when I do I'll take it to my gi.

Thank you so much! I have lots of researching to do now . . .

Ally

[Nicknerd]

Bluesky,

Also check out this link; this lady has MG and gastroparesis...This is her blog...

http://www.lemon-aideonline.com/?p=122

Sorry about the other link...It just links to an abstract...I couldn't get a hold of the full article...

Nicky

[jana]

Well, Ally, since YOU brought up such a "delightful" subject (*grin*) -- I have been constipated most of my adult life (until MG) -- even BEGGED my doctor for a prescription of Zelnorm -- took that for maybe a year -- loved it.

One of the reasons I love Mestinon -- it makes me REGULAR!! I used to go 7 days without a BM -- now, every single day -- it is a MIRACLE!! Mestinon does cause a little cramping -- and I do have to stay near a bathroom after the first pill -- but, that is a SMALL price to pay to have a normal feeling gut!!

I have IBS -- the 7 days of constipation would come with a price -- when the dam broke -- oh my oh my!!! The cramping and pain and discomfort and HOURS spent in the bathroom. It was horrible. I could literally lose almost 4 pounds. And then I was so drained the next day. A HORRIBLE cycle.

And, Mrs. D., I have been on the Candida regime for years -- my allergy doc was one of the pioneers.

So, when I mention MG being a "blessing in disguise" for me -- this is one of the things I am talking about!!

[Nicknerd]

True that, Jana!

I'm battling quitting smoking. Honest to God, it makes my sx much, much worse- plus all of the other problems it causes. But after I had those episodes of constipation, and before the speech problems, I was scared to quit because I was afraid I wouldn't be able to poo again! It seemed like medicine, at least in that respect. I now know what's going on, all because I got diagnosed (thank you, God)...I can quit now, and rely on the mestinon to help in all departments.

Bluesky,

No problem...I know what you're going through...It's so scary to experience these things, and not have any diagnosis, much less validation that what you're going through is real, and could very well kill you if the appropriate treatment isn't started...

I really believe in God...I'm not religious, not part of any particular belief system, but I do believe in God...

Every night, before going to sleep, I'd ask God to please make whatever I have expose itself enough that I could get a diagnosis and the help I needed. i'd promise that I'd be a straight-up person, do the right thing always, but to please either take me, or help me find out what was wrong. Well, it wasn't long after one of these heartfelt, utterly desperate prayers that my speech problems started. I don't know how all these things work. I know that I'm not more special than anyone else in this world, but I like to believe that the universe heard my plea, and helped me...I know that might sound strange to some people, and it might even be naive and silly, but I believe it...Sorry it got off-topic a bit! lol


nicky

[AnnieB3]

Ally, Can you keep a food diary?

Everyone has a different GI tract "clock." Knowing how long it takes from mouth to the other end is important. Then you can sort of know where the food is and when. Then you might be able to figure out in what part of the body the bloating is triggered - might.

Two things do that "one minute I'm fine the next I'm 9 months pregnant" thing to me. One is gluten. Seriously bad stuff (I have celiac). There is an acceptable parts per million in even some "gluten free" foods. The other thing that does it to me is corn. Any kind of corn.

When this happens to you, try drinking some Coke. The straight up kind. It will help push through ANYTHING, if that's the problem. Have you seen those "experiments" where it dissolves the toughest of foods (steak)? Scary.

It could be a hidden allergy. Some people with a tendency towards leaky gut will have allergic responses once foods get into the large intestine. So, you could try liquid Benadryl if that happens again too. But only try one thing at a time.

You need acetylcholine for peristalsis (how food moves through the GI tract). Muscles are what move food through the GI tract.

It is probably something you are eating, plus the MG thing. So if you can track all the foods and when you eat them, it'll help. Maybe limit foods each day to certain grains. Like potatoes for 24 hours, then rice, etc. Some foods like rice are hard for people without stomach acid, like me, to digest.

http://www.suite101.com/article.cfm/allergies/87995

Dr. William Walsh is a brilliant guy. He has a book, which I think is called The Food Allergy Book. It is very good.

I actually saw him years ago. He talked about some of the things Mrs. D pointed out. Chemicals in foods can cause problems too.

Lovely conversation, guys!

Annie

[Nicknerd]

Sorry...It's my fault that the conversation went down the shi**er! lol...I hope that nobody poo poos this convo.!


(P.S. Kinda a fan of poo jokes, guilty as charged lol)