Esophageal dysmotility

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Hello @brie87144 Thank you for your recent post about your swallowing issues. I can understand your frustration in having difficulties and being given a lot of information that is not easy to understand. That is most frustrating! We have a number of members of Mayo Connect who have discussed swallowing problems, so as you read through some of their posts you might be helped a little. As Mayo Connect is an online patient support community, we are not able to make diagnoses nor to interpret test results. That must be left to your doctor. From what you have said in your post, your doctor is not able to tell you more until he/she does some more testing, which means more waiting (that must be why they call us patients - we need a lot of patience!). However, I urge you to hang in there and read some of the posts here about swallowing problems and see if your doctor or his nurse may be able to help you sort out some of the information that they have obtained so far. Here is some information from Mayo's website about dysphagia, that might be helpult to you in the meantime http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-2003344. Keep in touch and let us know of your progress. Teresa

Welcome to Connect, @marksnow. Thank you for joining this discussion and for sharing information. May I ask, when are you scheduled to have the surgery?

Hello, I am six months into the worst health nightmare of my life. I went to see a dentist in early January 2017 for a root canal. He injected me with numbing solution, but couldn't get me numb. For three days after that injection my heart was racing out of my chest, and I was having tremors at night. I went to the doctor and she said it's likely the solution went into my system, and since it has epinepherine, it caused my heart symptoms. So she put me on propranolol/Inderal 20 mg 2x a day. After a few days, I developed intense mucous and cough and it felt like my throat was flapping in the wind. I was also experiencing what felt like my heart being squeezed and my throat closing. So she told me to back off the meds, and sent me to a cardiologist. The day I saw the cardiologist I was having major propranolol withdrawals. The cardiologist gave me the same information my GP had given me, that it was likely he dental numbing solution. She put me on a different beta blocker called metoprolol succinate ER. Six hours after taking it, I was having what felt like heart flutters when eating, then feeling like if my swallow was stopping. After a few days I noticed it was becoming increasingly harder to swallow, until by the end of ONE WEEK on the medication, I could not swallow at all and was choking on chicken broth and having very intense feelings of my heart being squeezed and then my throat closing. I took myself to a gastroenterologist after having googled my symptoms and being ignored by every medical professional I saw, and he said the drugs likely relaxed my smooth muscle too much. He had me stop the medication and do an endoscopy and a barium swallow/manometry. My endoscopy was normal, and my barium swallow showed I had tertiary contractions and also significantly diminished primary peristalsis. About six weeks after stopping the meds, I was given a manometry which showed that i had 90% swallows failed. About two months after stopping I was given another barium swallow which showed that now my distal esophagus had diminished peristalsis and that i was having spasms. I have never had any problems in my life. Then six hours after taking a random heart medication, esophagus is malfunctioning. I am six months out, and i have had improvement in that I am no longer choking up top, but i can't eat solids w/o spasms and food getting stuck. The doctor said I have non specific esophageal motility disorder and there was NOTHING ELSE THEY COULD FOR ME AND I HAD TO LEARN TO COPE. I refuse to accept this and am looking for a doctor with 1) compassion and 2) knowledge and willingness to try to treat, as I've read there are treatments. I realize none of the treatments work for all, but to give up on me and leave me hanging w/o a nutrition plan, w/o anything, is cruel. I've lost 53lbs since this started and I was so weak I could barely work. I am doing better now, but only because I am eating tons of ice cream and anything liquid, SO MUCH SUGAR. If anyone has experienced this or maybe can assist, please let me know. Thanks! i am in the dallas, tx area. I will take all recommendations, for in and out of state and even at Mayo! Thanks!

Hello, I am six months into the worst health nightmare of my life. I went to see a dentist in early January 2017 for a root canal. He injected me with numbing solution, but couldn't get me numb. For three days after that injection my heart was racing out of my chest, and I was having tremors at night. I went to the doctor and she said it's likely the solution went into my system, and since it has epinepherine, it caused my heart symptoms. So she put me on propranolol/Inderal 20 mg 2x a day. After a few days, I developed intense mucous and cough and it felt like my throat was flapping in the wind. I was also experiencing what felt like my heart being squeezed and my throat closing. So she told me to back off the meds, and sent me to a cardiologist. The day I saw the cardiologist I was having major propranolol withdrawals. The cardiologist gave me the same information my GP had given me, that it was likely he dental numbing solution. She put me on a different beta blocker called metoprolol succinate ER. Six hours after taking it, I was having what felt like heart flutters when eating, then feeling like if my swallow was stopping. After a few days I noticed it was becoming increasingly harder to swallow, until by the end of ONE WEEK on the medication, I could not swallow at all and was choking on chicken broth and having very intense feelings of my heart being squeezed and then my throat closing. I took myself to a gastroenterologist after having googled my symptoms and being ignored by every medical professional I saw, and he said the drugs likely relaxed my smooth muscle too much. He had me stop the medication and do an endoscopy and a barium swallow/manometry. My endoscopy was normal, and my barium swallow showed I had tertiary contractions and also significantly diminished primary peristalsis. About six weeks after stopping the meds, I was given a manometry which showed that i had 90% swallows failed. About two months after stopping I was given another barium swallow which showed that now my distal esophagus had diminished peristalsis and that i was having spasms. I have never had any problems in my life. Then six hours after taking a random heart medication, esophagus is malfunctioning. I am six months out, and i have had improvement in that I am no longer choking up top, but i can't eat solids w/o spasms and food getting stuck. The doctor said I have non specific esophageal motility disorder and there was NOTHING ELSE THEY COULD FOR ME AND I HAD TO LEARN TO COPE. I refuse to accept this and am looking for a doctor with 1) compassion and 2) knowledge and willingness to try to treat, as I've read there are treatments. I realize none of the treatments work for all, but to give up on me and leave me hanging w/o a nutrition plan, w/o anything, is cruel. I've lost 53lbs since this started and I was so weak I could barely work. I am doing better now, but only because I am eating tons of ice cream and anything liquid, SO MUCH SUGAR. If anyone has experienced this or maybe can assist, please let me know. Thanks! i am in the dallas, tx area. I will take all recommendations, for in and out of state and even at Mayo! Thanks!