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Anybody have Gastroparesis?

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Unread 11-28-2012, 08:24 PM   #21
jana
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Originally Posted by bny806 View Post
Immunosuppresants do make me nervous for that and many other reasons.. but if need be I'll do them... I am sick enough as is with the kids bringing home germs at this point though!
funny you say that about the frying of the brain!! I have said that many times- I sware I get a little dumber each time I have gotten meningitis!! I have the worst brain fog during those times, its really really strange!!!!


I will be curious if they will let me try mestinon as a trial in the near future.. I just worry about the long term effects of my body on IVIG.. esp since my body does seem to have an allergy at some level to it!
I have a cousin who is on immune suppressants for a liver and a kidney transplant. She has to avoid even the mention of a cold -- and with two young grandkids (the LOVES of her life) this is soooooo hard!

Ya know, I have always blamed my "brain fog" (and ongoing stupidity ) on plain ole MG. But, IVIG as a cause makes so much sense! Thanks for saying this!

Mesty is such a benign med -- except for the stomach cramps it can give. I hope they give you a trial SOON!
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Unread 11-28-2012, 09:47 PM   #22
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Jana, What happens if you have a protein shake? Well, besides not being able to swallow it well. Though you can always put oatmeal in it to thicken it up but that would defeat the liquid experiment.

I was wondering if liquid food went down. Due to my lack of stomach acid, I'm on Mestinon Syrup. It's a PITA due to it's size but it absorbs more quickly. I've never even tried the tablets.

I have to tell you that I think the drug companies, via antacids, are making us ill. People get sick from pigging out and then pop an antacid to feel better. But if you don't have enough stomach acid, the whole cycle keeps getting worse. Then you move on to acid blockers. Again, worse. Why would the human body have stomach acid in it if it wasn't good for us? The percentage of people who have too much is like less than 5%. That's not who is targeted for the sale of the antacids/acid blockers. To them, we're just a revenue stream.

You really can't say for sure if this is a acid or motility issue. If food isn't digested in the stomach - which is the main job of the stomach - then you really can't blame that on paresis. If the food coming up is more liquified, then I would think it's paresis. But that doesn't sound like what's going on, especially when it's had 8 or so hours to digest.

If you put a piece of food in a bowl, which literally has complete paresis, and then pour some liquid acid on it, it will eat away at the food. That's what came into my mind and made me still think it's an acid issue. Or the Coca-Cola experiment where it's so corrosive that it "digests" steak.

Okay, I have to ask . . . how's your B12 level? Iron, calcium or protein?

Also, the cabbage family (broccoli, etc.) is notorious for causing huge amounts of gas.

I'm glad you chimed in on this, Rach. I was hoping you would too.

Did your Dad have cancer of the pancreas alone or was it elsewhere? My grandparents had adenocarcinoma that started in the colon and then spread to organs from there. That's a significant difference.

Do you know if you have a hiatal hernia?

http://www.webmd.com/digestive-disorders/hiatal-hernia

Whatever is going on, it's making you miserable. I'm glad you have such a good primary doc to help you.

Annie

http://www.mayoclinic.com/health/dig...system/an00896

http://digestive.niddk.nih.gov/ddiseases/pubs/yrdd/

Last edited by AnnieB3; 11-29-2012 at 05:07 AM.
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Unread 11-29-2012, 05:38 AM   #23
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Hi,

Yeah I still lurk lol! Ive been on more frequently recently as Ive developed swallowing problems that seem to ease with mestinon. I havent bothered to tell any of my Drs as they all insist I dont have MG and because they are actually trying to help me for the first time in years I dont want to rock the boat. Its a sad situation to be in!

I have a wonderful speech therapist who is learning about Ehlers Danlos syndrome with me to try and help the swallowing and strengthen my voice because it goes really sexy after a few minutes of talking lol!

Jana - that wasnt a poor mans tilt table test. How to do it is to lie down in a darkened room for 20 mins and relax. Take your resting heart rate. Then Stand (dont sit just stand) and dont move (your body if you have problems will try and jig around to stop you fainting etc) Take your heart rate at 2 mins, 5 mins, 10 mins, 20 mins. If you can stand for that long. POTS is indicated if your heart rate goes above 120bpm or raises by 30-40 bpm and stays up.

I actually have done the full on test and threw up at the 10min point. Which was fun because I was strapped to a table at the time. The poor nurse had to play catch which was above and beyond the call of duty.

You dont just have to take your heart rate if you have a blood pressure monitor you could use that if it includes HR as well.

Your BP is considered low normal in the UK you have to be below 90/60 to be classed as having a low bp, but the world health authority says 100/60. I basically feel ill if I am below 115/60. I havent had blood pressure that high for years and I will regularly drop to 72/40! What fun.

Im glad you found the info useful

Rach
ps High Annie!
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
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Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
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Unread 11-29-2012, 01:14 PM   #24
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Originally Posted by AnnieB3 View Post
Jana, What happens if you have a protein shake? Well, besides not being able to swallow it well. Though you can always put oatmeal in it to thicken it up but that would defeat the liquid experiment.

Never tried a protein shake. I don't even eat much meat -- just chicken and fish. I don't drink milkshakes, either.

I was wondering if liquid food went down. Due to my lack of stomach acid, I'm on Mestinon Syrup. It's a PITA due to it's size but it absorbs more quickly. I've never even tried the tablets.

I have to tell you that I think the drug companies, via antacids, are making us ill. People get sick from pigging out and then pop an antacid to feel better. But if you don't have enough stomach acid, the whole cycle keeps getting worse. Then you move on to acid blockers. Again, worse. Why would the human body have stomach acid in it if it wasn't good for us? The percentage of people who have too much is like less than 5%. That's not who is targeted for the sale of the antacids/acid blockers. To them, we're just a revenue stream.

You really can't say for sure if this is a acid or motility issue. If food isn't digested in the stomach - which is the main job of the stomach - then you really can't blame that on paresis. If the food coming up is more liquified, then I would think it's paresis. But that doesn't sound like what's going on, especially when it's had 8 or so hours to digest.

This makes TOTAL sense!

If you put a piece of food in a bowl, which literally has complete paresis, and then pour some liquid acid on it, it will eat away at the food. That's what came into my mind and made me still think it's an acid issue. Or the Coca-Cola experiment where it's so corrosive that it "digests" steak.

Okay, I have to ask . . . how's your B12 level? Iron, calcium or protein?

B12 was checked about a year ago -- OK. Iron is low -- I took tablets until they made me nauseous. Now I'm eating VERY fortified cereal. Calcium was OK -- don't know about protein. I think they may have checked levels in my urine? If so, it was OK, too.

Also, the cabbage family (broccoli, etc.) is notorious for causing huge amounts of gas.

Yeah, and these are my FAVORITE foods!! Love me some Brussel sprouts!

I'm glad you chimed in on this, Rach. I was hoping you would too.

Did your Dad have cancer of the pancreas alone or was it elsewhere? My grandparents had adenocarcinoma that started in the colon and then spread to organs from there. That's a significant difference.

He had adenocarcinoma of the pancreas. It spread to the liver, diaphragm, and lymph nodes before being found. Started in the tail of the pancreas, so he didn't have the early tell-tale jaundice. He lived about 3 or 4 months after diagnosis.

Do you know if you have a hiatal hernia?

I don't think so. BUT, my dad did and my sister does!

http://www.webmd.com/digestive-disorders/hiatal-hernia

Whatever is going on, it's making you miserable. I'm glad you have such a good primary doc to help you.

Thanks so much -- and I have good people here helping me, too!

Annie

http://www.mayoclinic.com/health/dig...system/an00896

http://digestive.niddk.nih.gov/ddiseases/pubs/yrdd/
I just got back from the GP -- will post what he said in a new box.
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Unread 11-29-2012, 01:19 PM   #25
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Originally Posted by rach73 View Post
Hi,

Yeah I still lurk lol! Ive been on more frequently recently as Ive developed swallowing problems that seem to ease with mestinon. I havent bothered to tell any of my Drs as they all insist I dont have MG and because they are actually trying to help me for the first time in years I dont want to rock the boat. Its a sad situation to be in!

I have a wonderful speech therapist who is learning about Ehlers Danlos syndrome with me to try and help the swallowing and strengthen my voice because it goes really sexy after a few minutes of talking lol!

Jana - that wasnt a poor mans tilt table test. How to do it is to lie down in a darkened room for 20 mins and relax. Take your resting heart rate. Then Stand (dont sit just stand) and dont move (your body if you have problems will try and jig around to stop you fainting etc) Take your heart rate at 2 mins, 5 mins, 10 mins, 20 mins. If you can stand for that long. POTS is indicated if your heart rate goes above 120bpm or raises by 30-40 bpm and stays up.

Oh, Rach!! Thanks soooo much! I AM going to do this! I've almost passed out so many times from kneeling/squatting and then getting up -- there MUST be something odd going on. (My brain fog -- I forgot about this until I read your post).

I actually have done the full on test and threw up at the 10min point. Which was fun because I was strapped to a table at the time. The poor nurse had to play catch which was above and beyond the call of duty.

You dont just have to take your heart rate if you have a blood pressure monitor you could use that if it includes HR as well.

Your BP is considered low normal in the UK you have to be below 90/60 to be classed as having a low bp, but the world health authority says 100/60. I basically feel ill if I am below 115/60. I havent had blood pressure that high for years and I will regularly drop to 72/40! What fun.

When I get a bad migraine, my BP is "normal" -- LOL. Like 120/80 or even 130/85. I also have "white coat" -- so, my BP seems normal at EVERY doctor's appointment.

Im glad you found the info useful

Rach
ps High Annie!
Thanks so much, Rach! This forum is such a good "school" -- I learn so much here!
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Unread 11-29-2012, 01:31 PM   #26
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Such a kind and thorough doc I have. He listened to all of my symptoms and then asked a LOT of questions. He felt and pushed all over my abdomen.

He thinks I might have gall stones! So, I will have an ultrasound early next week. He also did bloodwork -- regular stuff (CBC) and a liver panel.

Ya know, I have NOT hurt under my right breast OR in the upper right quadrant OR near my shoulder blade............so, I had NOT even considered gall stones! I just did a search and a questionaire -- and I "fit" about 90% of the symptoms!! Apparently, gall stones can cause temporary gastroparesis, too.

My grandmother had gall stones.......

Doc is NOT sure, of course. Said he wanted to rule this out BEFORE sending me on to a gastro.

I'm really kind of hoping he's right. Gall stones would be MUCH easier to deal with than NO stomach acid OR chronic gastroparesis, RIGHT?!?!?!?!

So, has anybody had gallstones?? Inquiring minds want to know..........
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Unread 11-29-2012, 02:15 PM   #27
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This will be quick for now, though I have more thoughts.

In my family, gallstones are directly related to not enough stomach acid. You can have no symptoms to a lot of them. My Mom's belching and other symptoms were not alleviated by taking her gall bladder out. Only taking Betaine HCL, 12 years later, made her GI symptoms go away. And she had a low B12 too. Betaine is a very simple solution to no stomach acid as opposed to surgery.

Your low BP could also be a sign of Addisons.
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Unread 11-29-2012, 05:23 PM   #28
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Originally Posted by AnnieB3 View Post
This will be quick for now, though I have more thoughts.

In my family, gallstones are directly related to not enough stomach acid. You can have no symptoms to a lot of them. My Mom's belching and other symptoms were not alleviated by taking her gall bladder out. Only taking Betaine HCL, 12 years later, made her GI symptoms go away. And she had a low B12 too. Betaine is a very simple solution to no stomach acid as opposed to surgery.

Your low BP could also be a sign of Addisons.
DRAT!! I wanted an "easy" fix for something, ya know?!?!?! Something where I could just do ONE thing.....and not have to take another med for the rest of my life.

Won't they HAVE to do surgery IF I have stones??

Yeah, I thought about the Addisons -- with all of the salt I CRAVE!! But, my skin color is normal. Of course I could be one of the few without discoloration.

Thanks, Annie.
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Unread 11-29-2012, 06:49 PM   #29
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They may be able to take out your gallstones nonsurgically by going down your stomach and into your gallbladder with a scope thing. I was almost sure that I had gallstones, but I didn't. The symptoms went away on their own with no diagnosis.
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Unread 11-30-2012, 10:17 AM   #30
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They may be able to take out your gallstones nonsurgically by going down your stomach and into your gallbladder with a scope thing. I was almost sure that I had gallstones, but I didn't. The symptoms went away on their own with no diagnosis.
Thanks, Celeste! As long as I'm "asleep" when they do it!

Were you having these symtoms before or after being dx with MG?
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