Does anyone else have Gastroparesis not caused by diabetes?

Posted by Darlia @darlia, Nov 9, 2017

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

I have gastroparesis not caused from diabetes. I also have lower extremity neuropathy. If anyone like myself is having chronic nausea with no relief go look up (Marinol.) It is synthetic THC and it works very well. I has a little "pot like" buzz the first time i took it and thankfully that went away. It was originally used on nausea caused from chemotherapy.

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Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

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@aishia

Hello All, I'm new to this thread but I must say so far I ha e read nothing but positive and encouraging comments. I was diagnosed with Gastroparessis in 2014 and I'm in Raleigh, NC. I have tried many medicines including Reglan, Erythromycin, etc. I currently rotate between Zofran, Benadryl, and Phenergan for nausea. I was recently diagnosed with Jackhammer Esophagus and I'm waiting on my appointment for Botox injections… I have been looking to get the Pacemaker but no doctors here in NC actually performs the procedure. I've lost weight, had to have a port placed due to my veins not being accessible due to dehydration from vomiting so much in the beginning. I do have a few questions, feedback is greatly appreciated.

Does anyone know of any GI specialist that will do the initial consult over the phone?

Has anyone had their insurance cover traveling cost to go out if state to see another specialist or to have a procedure done such as the Pacemaker or G-Poem surgery?

Could someone please provide some of their best GI or Gastroparesis specialist?

I'm at the point where if I need to travel for a resolution I will. My last gastric emptying study was in 2014 should I request another one or can doctor's use the previous test?

Thank you all in advance for your feedback.

***Aetna is my current health insurance***

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Hello @aishia,

I'd like to welcome you, and thank you for reaching out to Mayo Clinic Connect. We're so glad you've joined. Mayo Clinic doctors diagnose and treat almost 1,600 people with gastroparesis every year, and Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation by U.S. News & World Report.
Here's some information about gastroparesis and Mayo Clinic's care approach: https://www.mayoclinic.org/diseases-conditions/gastroparesis/care-at-mayo-clinic/mac-20355796

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

Might I suggest you also call Mayo Clinic's Patient Account Services? The number to call is 800-660-4582
For further information check out this resource about billing and insurance from Mayo Clinic: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I'd also like to introduce you to @katmandoo who has a gastric pacemaker due to idiopathic gastroparesis, and who will be able to share some insights that might help you.

You may also wish to view this conversation on Connect, "Does anyone here have or heard of nutcracker esophagus?" https://connect.mayoclinic.org/discussion/does-anyone-here-have-or-heard-of-nutcracker-esophagus/, where @blackoutthesun @maureercria have shared their experiences with nutcracker esophagus, also referred to as jackhammer esophagus.

@aishia, how are you managing your symptoms day-to-day?

Liked by blackoutthesun

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@aishia

Hello All, I'm new to this thread but I must say so far I ha e read nothing but positive and encouraging comments. I was diagnosed with Gastroparessis in 2014 and I'm in Raleigh, NC. I have tried many medicines including Reglan, Erythromycin, etc. I currently rotate between Zofran, Benadryl, and Phenergan for nausea. I was recently diagnosed with Jackhammer Esophagus and I'm waiting on my appointment for Botox injections… I have been looking to get the Pacemaker but no doctors here in NC actually performs the procedure. I've lost weight, had to have a port placed due to my veins not being accessible due to dehydration from vomiting so much in the beginning. I do have a few questions, feedback is greatly appreciated.

Does anyone know of any GI specialist that will do the initial consult over the phone?

Has anyone had their insurance cover traveling cost to go out if state to see another specialist or to have a procedure done such as the Pacemaker or G-Poem surgery?

Could someone please provide some of their best GI or Gastroparesis specialist?

I'm at the point where if I need to travel for a resolution I will. My last gastric emptying study was in 2014 should I request another one or can doctor's use the previous test?

Thank you all in advance for your feedback.

***Aetna is my current health insurance***

Jump to this post

I have written in about all my situations that give me awake and asleep problems. I have seen a urologist and gastroenterologist and tried medications. I also had surgery by an ear-nose-throat doctor. I have hiatal hernaia, acid reflux, IBS, Hemerroids, urinary urgency, anxiety, osteoarthritis. Whenever I list all this stuff, I feel sorry for myself so I hate to say it. It makes me face my reality. Newer medications for IBS and urinary urgency are quite expensive. They didn't help that much so for a few days I am trying life without them. I have gotten meat stuck in my esphagus. I believe that was the nutracker esophagus you were describing. I have glaucoma too.

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@aishia

Hello All, I'm new to this thread but I must say so far I ha e read nothing but positive and encouraging comments. I was diagnosed with Gastroparessis in 2014 and I'm in Raleigh, NC. I have tried many medicines including Reglan, Erythromycin, etc. I currently rotate between Zofran, Benadryl, and Phenergan for nausea. I was recently diagnosed with Jackhammer Esophagus and I'm waiting on my appointment for Botox injections… I have been looking to get the Pacemaker but no doctors here in NC actually performs the procedure. I've lost weight, had to have a port placed due to my veins not being accessible due to dehydration from vomiting so much in the beginning. I do have a few questions, feedback is greatly appreciated.

Does anyone know of any GI specialist that will do the initial consult over the phone?

Has anyone had their insurance cover traveling cost to go out if state to see another specialist or to have a procedure done such as the Pacemaker or G-Poem surgery?

Could someone please provide some of their best GI or Gastroparesis specialist?

I'm at the point where if I need to travel for a resolution I will. My last gastric emptying study was in 2014 should I request another one or can doctor's use the previous test?

Thank you all in advance for your feedback.

***Aetna is my current health insurance***

Jump to this post

I went to Omaha, NE to get my gastric pacemaker implanted. I live in Kansas and was told of three places closest to me to get one. They were Omaha, St. Louis and Wichita. My insurance did not cover my mileage but the pacemaker has been a God send. I had it implanted in April 2012. My Dr told me not to take Reglan because it can cause Parkinson’s disease. I also got the fundiplication wrap and I wouldn’t advice to get that because I was miserable and he accidentally cut my spleen and it had to be removed. My gastroenterologist recommended these places so maybe find a good Gastroenterologist in your area to help you. Good luck and get better, I did. Kathy

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@aishia

Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

Jump to this post

Wow that sounds exactly like the same thing I'm going through and have been going through since childhood! I've multiple spinal injuries including scoliosis and severe anxiety, a little bit depressed but mainly because of the chronic pain. Also I was pushed out of a moving car at the age of 1, luckily we were turning a corner. I suffered a very minor head trauma concussion and was sent home. It was so minor that even my father doesn't know about it. My mother and my grandmother died due to esophageal issues but when my grandmother died in 1999 they said she had rare growths in her lungs. In 2010 when my mother died, at the age of 58, they said the same thing about her at first but she ended up with necrotizing pneumonia and died 1 week later. I've also been very emotional since childhood and my pupils get large especially when I was a child. I also have fibromyalgia. My current psych doc ordered me to go to counseling, I had several traumatic things that happened to me since early childhood. Another psych doctor several years ago asked if I had head trauma as a baby because I had a seizure at age 25 due to orthostatic hypotension. He said people in their mid-20s reported having seizures after head trauma as a baby. I have Bodelekies (wrong spelling, another so-called rare disease) hiatal hernia and according to my research it's from blunt trauma and neurological issues. Almost everything, I've read here, I have including dehydration and I drink lots of water! I'm heading out today to get blood work. Thank you so much @aishia @katmandoo @maureercria and anyone else I may have missed I will post my future results.

Liked by Darlia

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I have scoliosis and anxiety too. I don't know of trauma to my body, but the doctor induced my mother's labor and later said he guessed wrong on my due date. I was born at least one month early and had no eyelashes or fingernails and my digestive system and breathing had trouble because they were not mature for birth yet. My mother said she had to keep sticking her finger down my throat when I was a baby and she'd pull out flem so I wouldn't choke to death. I took pills for anxiety for quite a while and they didn't seem to help and they slowed my reactions and I had some car accidents so I won't take them any more. I haven't had any more car accidents since I stopped taking them.

Liked by blackoutthesun

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One more thing I've learned with nutcracker, the main procedure that seems to be working is POEM, can't remember what those letters stand for but I've a tiny Facebook group about 55 people so… I'm also narcissistic

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One more thing LOL I'm also OCD and narcissistic, it says narcissism is rare but it's not so rare anymore

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I just seen this on Facebook from a good friend of mine, modern technology has just reached a much higher level! My chest is hurting so rubbing Icy Hot on it and hope that I sleep more than 4 or 5 hours. I've taken my meds so… I hope this helps! @kanaazpereira

https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787

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Let us know how that goes for you.

Liked by blackoutthesun

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Mine came from a C-diff infection and the Microscopic colitis/Collagenous

Liked by Darlia

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Just been diagnosed with gastroparesis and doing the diet and still a wait to see gi again havent been told much about it …

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Hello @hymelchristy, and welcome to Connect,

You may notice that I moved your discussion and combined it with this existing discussion on gastroparesis. I did this because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you may be experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

May I ask if you would share a few more details? What type of diet are you following? What symptoms are you experiencing? Sincerely look forward to getting to know you.

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@ohimsick

I have gastroparesis not caused from diabetes. I also have lower extremity neuropathy. If anyone like myself is having chronic nausea with no relief go look up (Marinol.) It is synthetic THC and it works very well. I has a little "pot like" buzz the first time i took it and thankfully that went away. It was originally used on nausea caused from chemotherapy.

Jump to this post

I hope to have my doctor presrcibe a neuropathy test for me. Due to a friend having neuropathy, I looked up on the Mayo site to learn more about neuropathy. It can cause digestive problems (which I have and they call it IBS and acid reflux); and sleep problems (which I have); extreme touch sensitivity (a lumped up wrinkle in my sheets can cause pain and wake me up); and rheumatoid arthritis pain – mine is osteo-arthritis). I need to get this checked out to see if I've been misdiagnosed.

Liked by Darlia

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