Ineffectual Esophagus Motility

Posted by carolina27 @carolina27, May 8 8:23am

Diagnosed with Ineffectual Esophagus Motility. I have been suffering with attacks that last anywhere from 2 to 6 hours of severe excruciating chest pain, squeezing in throat, and back shoulder are pain for the last 8 months. All heart tests came out normal. On a daily basis I have dysphagia and squeezing in throat. I have eliminate most foods. I have lost 23 pounds in a (4) few months. I have had three opinions including two from motility specialist in NYC who told me there is nothing I can take for the pain. My manometry show 10% failed, 50% ineffective and 40% weak I have tried channel blockers, nitroglycerin, motility and nothing works. Does anyone have this condition that is on a medication that works? Has anyone gone to the Mayo Clinic for this condition that wasn't told there is nothing we can do for you?

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Hello I have the same issue. After five years of looking for an answer found an ENT doctor which took the time out to a scin of my spine . I have bone spurs in my spine which is hitting against my esophagus. I have lost over 150 pounds weight was 168 pounds now I'm a merely 90 to 95 pounds. I'm on a feeding tube now to get nutrients in my system and when I reach a certain weight for the surgery. I'm on all types of medicine have you ever tried gabapentin it helps with the spasms and pain. Do you have a nasal drip please respond. I pray things get better for you. I pray I have the surgery before my birthday so I can finally eat a decent meal with out throwing up after I burp . Do you burp a lot and it doesn't want to come up. Keep me informed. Again I pray things get better for you

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I need more testing but my 3rd opinion doctor thinks I have esophageal spasms. Hevsays it can be treated with surgery, medication or both. Some people get relief from Altoids mints because natural peppermint is a muscle relaxer. Good luck. This condition is so painful and frustrating.

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@hikeema123

Hello I have the same issue. After five years of looking for an answer found an ENT doctor which took the time out to a scin of my spine . I have bone spurs in my spine which is hitting against my esophagus. I have lost over 150 pounds weight was 168 pounds now I'm a merely 90 to 95 pounds. I'm on a feeding tube now to get nutrients in my system and when I reach a certain weight for the surgery. I'm on all types of medicine have you ever tried gabapentin it helps with the spasms and pain. Do you have a nasal drip please respond. I pray things get better for you. I pray I have the surgery before my birthday so I can finally eat a decent meal with out throwing up after I burp . Do you burp a lot and it doesn't want to come up. Keep me informed. Again I pray things get better for you

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I have had a nasal drip,. I have not tried gabapentin. When I am having the attack I do feel like I need to burp but doesn't happen, but when I can burp it relieves the pressure from the spams for seconds before I get another one. Wishing you the very best and I hope you can get the surgery soon and find relief.

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@warrendog

I need more testing but my 3rd opinion doctor thinks I have esophageal spasms. Hevsays it can be treated with surgery, medication or both. Some people get relief from Altoids mints because natural peppermint is a muscle relaxer. Good luck. This condition is so painful and frustrating.

Jump to this post

Hope you find an answer and relief.

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@hikeema123

Hello I have the same issue. After five years of looking for an answer found an ENT doctor which took the time out to a scin of my spine . I have bone spurs in my spine which is hitting against my esophagus. I have lost over 150 pounds weight was 168 pounds now I'm a merely 90 to 95 pounds. I'm on a feeding tube now to get nutrients in my system and when I reach a certain weight for the surgery. I'm on all types of medicine have you ever tried gabapentin it helps with the spasms and pain. Do you have a nasal drip please respond. I pray things get better for you. I pray I have the surgery before my birthday so I can finally eat a decent meal with out throwing up after I burp . Do you burp a lot and it doesn't want to come up. Keep me informed. Again I pray things get better for you

Jump to this post

I know I responded earlier, but just one question, did you get a manometry test and were you diagnosed with Ineffectual
Esophagus Motility?
Thank you.

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@carolina27

I have had a nasal drip,. I have not tried gabapentin. When I am having the attack I do feel like I need to burp but doesn't happen, but when I can burp it relieves the pressure from the spams for seconds before I get another one. Wishing you the very best and I hope you can get the surgery soon and find relief.

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Thanks. Try this nasal spray it's called FLUTICASONE PROPIONATE nasal spray. That should help with the nasal drip. I wish you the best 🙏

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@carolina27

I know I responded earlier, but just one question, did you get a manometry test and were you diagnosed with Ineffectual
Esophagus Motility?
Thank you.

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Yes I did. They called it a non MOTILITY disorder. My esophagus isn't working right due to the bone spurs in my spine which they say is hitting against my esophagus but like I said earlier I can't get the surgery until I gain some weight.

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@hikeema123

Yes I did. They called it a non MOTILITY disorder. My esophagus isn't working right due to the bone spurs in my spine which they say is hitting against my esophagus but like I said earlier I can't get the surgery until I gain some weight.

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I understand. Wishing you the best and hope you can get the surgery soon. Not easy.

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@carolina27

I have had a nasal drip,. I have not tried gabapentin. When I am having the attack I do feel like I need to burp but doesn't happen, but when I can burp it relieves the pressure from the spams for seconds before I get another one. Wishing you the very best and I hope you can get the surgery soon and find relief.

Jump to this post

Hi there, this part of my story is SO mild compared to yours. When you say, need to burp, have you considered using club soda: no flavor, but nothing that might make it worse. My throat just randomly seems to get really narrow, I've only missed the sink, garbage can, toilet 1x, I pulled my shirt up and let it all out. I also use the club soda to gargle, hard and deep (over the sink of course), it feels like it breaks through either the thick mucus and/or opens up my throat. I get the pressure from throat-neck-shoulder-top and back-down into chest-down ribs to hips, mostly left side. The burning, I swear my chest is actually on fire, I squeeze it so hard, I think I might break a rib. My motility is really almost dead in my intestines small and large...hence constipation that is worse than childbirth. Anyway, I bring this up, because I have had CIC for 17 yrs, literally tried everything meds, natural, etc... I just got my second opinion that I have had PRIMARY Hyperparathyroidism for probably 10+ years. So I have to get surgery, I am actually relieved, and I'm hoping that this will help with my OMG multiple issues. My case is screwy but my doctors never ever mentioned that high calcium levels, 15 yrs ago when it took them. (PCP, ENDOCRINOLOGY AND GI) 4 yrs to diagnose me with secondary Hyperparathyroidism caused by malabsorption... I have Celiac disease, congenital but asymptomatic. Elevated calcium levels wreak havoc on our smooth muscles ( our intestines) . I don't know if your motility issues extend into your pooping life... but mine just doesn't seem to work at all, has gotten much worse after obstructions. So, I have to keep my body in a very liquidy state. Anyway, I thought I would share this. BTW: parathyroid has NOTHING to do with thyroid, they are just in your neck.
Good luck with your health 🌼

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ShelleyW, I had stomach issues for years. Was treated for GERD. Went to the chiropractor at least once a week and sometimes two or three because of lower back and neck pain. Did not know how any one COULDN'T go to a chiro, as my lower back neck hurt almost all the time. Then my memory started getting really bad and I was only in my early 50's. ALL these symptoms happened randomly, not all at the same time and not every day. Finally, when my stomach got so bad and I went to the doctor, he did blood work and my calcium came back very high. He sent me to a thyroid/parathyroid surgeon who did an ultrasound and discovered one of my parathyroid glands was the size of a grape - you have four and they are supposed to be no larger than a grain of rice. He performed surgery and the following day stomach issues had dissipated and over the course of a few months the back and neck pain stopped and memory issues improved greatly. This disorder is called bones, groans and moans, because of the way symptoms present - not all at once and not all the time. Because it leeches calcium out of your bones, they can ache on any part of the body. Good luck!

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