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Anybody have Gastroparesis?

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Unread 12-05-2012, 04:55 PM   #41
jana
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Sorry it has been so long since I responded. I got sick AGAIN on Saturday -- this time in the afternoon, NOT at night like my previous episodes.

Doc called to say all of my bloodwork was normal.....even the metabolic panel. Red blood cells were low -- but, have been this way for a couple of months.

Had the ultrasound -- NORMAL! No gall stones or pancreas problems.

My upper stomach is still hurting after I eat -- and all I have been eating is Jello, crackers, and a little bit of rice. (I lost about 3 more lbs in the past 6/7 days.) So, GP got me an appointment at a gastroenterology clinic, STAT. I saw a nurse practitioner.

Let me tell you, this visit was an answer to PRAYERS!! The NP had previously worked in a pulmonology clinic and knew ALL about MG!! I was stunned and sooooo very happy! I actually started crying. The NP said that with bulbar MG, gastroparesis is common. I will have a gastric emptying test in the next week or so! The NP also wants me to have an endoscopy and colonoscopy AT the SAME APPOINTMENT!! Said I would already be sedated -- so, I won't even know what is going on! YAY!!!! The NP is also gonna have an anesthetist WITH me during the scopes......just to watch me and my breathing and make sure MG doesn't tank.

I still don't feel well -- physically, but emotionally, I am greatly relieved. I feel like I will finally find out what is going on.....and hopefully get something to make me "better".

Many, many thanks to you all for urging me to seek medical advice and for giving me so much info about what might be going on!!!

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Unread 12-05-2012, 09:36 PM   #42
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Jana, Blood tests for clotting disorders like Antiphospholipid Antibody Syndrome are easy. APS is fairly common for MGers to have.

That's great you got in so quickly. I'm sorry you're having symptoms. You might want to ask them to test for pernicious anemia (parietal cell antibodies and intrinsic factor antibodies). Also, they can check stomach pH when they do an upper endoscopy but they have to think to do it! They really should figure out if you are producing acid or not or are producing a smaller amount.

The prep isn't fun but the procedures are so quick. They might have to keep you in recovery longer, due to the MG. I had to do that. Any anesthetic drugs are harder to recover from.

They can monitor both your ECG and O2. I also really hope they look for signs of celiac disease in the small intestine.

Whatever is going on, I hope you find answers and can stop this from happening. How exhausting to not be able to eat without symptoms!


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Unread 12-06-2012, 12:17 PM   #43
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Originally Posted by AnnieB3 View Post
Jana, Blood tests for clotting disorders like Antiphospholipid Antibody Syndrome are easy. APS is fairly common for MGers to have.

Yeah! I remember, now -- they checked my sister for this! Will add to my list!!

That's great you got in so quickly. I'm sorry you're having symptoms. You might want to ask them to test for pernicious anemia (parietal cell antibodies and intrinsic factor antibodies). Also, they can check stomach pH when they do an upper endoscopy but they have to think to do it! They really should figure out if you are producing acid or not or are producing a smaller amount.

Will add these to my list, too!!

The prep isn't fun but the procedures are so quick. They might have to keep you in recovery longer, due to the MG. I had to do that. Any anesthetic drugs are harder to recover from.

The NP looked up all different preps -- and gave me the one that involved the least amount of fluid -- while avoiding anything contraindicated with MG. I'm sort of expecting it to take me longer to wake up. Even weak pain pills knock me out.

They can monitor both your ECG and O2. I also really hope they look for signs of celiac disease in the small intestine.

Adding these to the list, too!!

Whatever is going on, I hope you find answers and can stop this from happening. How exhausting to not be able to eat without symptoms!

The NP gave me Prilosec......I ate breakfast this morning and am NOT hurting!! YAY!!


Annie
Thanks so much, Annie!
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Unread 12-08-2012, 09:47 AM   #44
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Hi Jana,

Im so glad you have found a Dr that knows what they are talking about and isnt trying to fob you off!

I hadnt heard that gastroparesis can be an issue in MG - so I guess you learn something everyday. It makes sense though as a lot of people refer to the stomach as a muscle.

Really hoping everything goes well

Rach xx
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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.

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