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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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carolina27 | @carolina27 | May 10 9:31am
In reply to @shelleyw "Hi there, this part of my story is SO mild compared to yours. When you say,..." + (show)
@shelleyw

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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My parathyroid is normal. Good luck with your health as well and wishing you the best.

REPLY
jackielb | @jackielb | May 11 7:51am

I have Hypomotility esophageal dysphagia. I take 20 mg of Amitriptyline every night. It takes about 1 to 2 weeks to start. Some people 50 mg to notice a difference.

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shelleyw | @shelleyw | May 12 2:49pm
In reply to @penelope52 "ShelleyW, I had stomach issues for years. Was treated for GERD. Went to the chiropractor at..." + (show)
@penelope52

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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Penelope, THANK YOU SO VERY MUCH for your response. Your post is truly the highlight of my day. I am going to get the surgery. I live in northern CA but found a specialist in AZ. I initially was getting a second opinion, so very very glad I did. I have Tiertiary HPTH, I have had primary HPTH for over 10yrs, according to the second opinion. This has been overworking my PTH for soooo long that they are physically stretched out and will never be able to get better or turn off. I think I am getting all 4 glands removed, leaving a small section of the one gland that is in the best shape. I don't know if this site has private messaging or use our own emails. Would you be willing and able to tell me more about your experience and let me ask you questions? If you are not able to do this I understand, we are all here because we don't feel good. Thanx Shelley

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