Esophagus issues

@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?

@danybegood1, @brie87144

It's been awhile, and a lot has happened since March. For my terrible pain from peripheral neuropathy, I did a trial spinal cord stimulator implant and was approved for the permanent implant, which was done in May. My feet still burn and hurt, but it's much, much better. I had cataract surgeries on both eyes, which has greatly improved my vision. I've had an endoscopy, a colonoscopy, an x-ray swallowing test, and a scope to watch the back of my tongue during swallowing. I am seeing a speech therapist, who's giving me exercises to strengthen my tongue so it performs its job effectively. The ENT doctor found that the back of my tongue isn't strong enough to create sufficient pressure in my esophagus to propel the bolus through, and also found that it has choreiform movement. That means that it doesn't assemble the bolus the way it should, so food stays in my mouth longer than normal. She suggested that it could be a symptom of Huntington's Disease (genetic testing has shown that to be unlikely). So, without adequate pressure in my esophagus, I have to swallow more than once to achieve the pressure. Of course, then the bolus comes to the area of esophageal dysmotility, and starts and stops until it eventually gets to the door to my stomach. Usually it opens, but occasionally it opens at the wrong time, and a little gastric content sneaks up into my esophagus, which is called silent reflux. Yesterday, eating lunch took 50 minutes. First, chew and chew and chew, then gather it together to form a bolus, then comes the slow process of moving the bolus through the esophagus into the stomach. What a pain!

Now, having said all that, I wonder if you've seen any progress in your swallowing issues. Brie, I've learned a lot of medical things over the years, and, like you, I push for explanations if I don't understand completely. I also know enough by now that I understand more of what they say, and most of my doctors have figured out that I don't want them to dumb down what they say. I just return their dumbed down comments with intelligent responses using technical terms. If a doctor doesn't work with me, I move on to a better one. I guess I'm old enough that I can move on if I want to. I've assembled a pretty good team of doctors who care for me. The neurologist has been a challenge because his nature is not very outgoing, and I have to draw things out of him. My wife isn't impressed, but I see the potential. He did do one thing that was in his favor, suggesting that I get another opinion, which led me to a good pain specialist.

I was skeptical about seeing a speech therapist, but I've been impressed with her, and she's explained a lot and moved me along to appropriate tests. She does way more than help kids with speech issues.

Anyway, things are moving forward, maybe at a slower pace than I'd like, but I have hope that I'll not develop worsening symptoms.

I'm glad that you don't have psych problems, Brie. They really can exacerbate physical problems.

Jim

@danybegood1, @brie87144

It's been awhile, and a lot has happened since March. For my terrible pain from peripheral neuropathy, I did a trial spinal cord stimulator implant and was approved for the permanent implant, which was done in May. My feet still burn and hurt, but it's much, much better. I had cataract surgeries on both eyes, which has greatly improved my vision. I've had an endoscopy, a colonoscopy, an x-ray swallowing test, and a scope to watch the back of my tongue during swallowing. I am seeing a speech therapist, who's giving me exercises to strengthen my tongue so it performs its job effectively. The ENT doctor found that the back of my tongue isn't strong enough to create sufficient pressure in my esophagus to propel the bolus through, and also found that it has choreiform movement. That means that it doesn't assemble the bolus the way it should, so food stays in my mouth longer than normal. She suggested that it could be a symptom of Huntington's Disease (genetic testing has shown that to be unlikely). So, without adequate pressure in my esophagus, I have to swallow more than once to achieve the pressure. Of course, then the bolus comes to the area of esophageal dysmotility, and starts and stops until it eventually gets to the door to my stomach. Usually it opens, but occasionally it opens at the wrong time, and a little gastric content sneaks up into my esophagus, which is called silent reflux. Yesterday, eating lunch took 50 minutes. First, chew and chew and chew, then gather it together to form a bolus, then comes the slow process of moving the bolus through the esophagus into the stomach. What a pain!

Now, having said all that, I wonder if you've seen any progress in your swallowing issues. Brie, I've learned a lot of medical things over the years, and, like you, I push for explanations if I don't understand completely. I also know enough by now that I understand more of what they say, and most of my doctors have figured out that I don't want them to dumb down what they say. I just return their dumbed down comments with intelligent responses using technical terms. If a doctor doesn't work with me, I move on to a better one. I guess I'm old enough that I can move on if I want to. I've assembled a pretty good team of doctors who care for me. The neurologist has been a challenge because his nature is not very outgoing, and I have to draw things out of him. My wife isn't impressed, but I see the potential. He did do one thing that was in his favor, suggesting that I get another opinion, which led me to a good pain specialist.

I was skeptical about seeing a speech therapist, but I've been impressed with her, and she's explained a lot and moved me along to appropriate tests. She does way more than help kids with speech issues.

Anyway, things are moving forward, maybe at a slower pace than I'd like, but I have hope that I'll not develop worsening symptoms.

I'm glad that you don't have psych problems, Brie. They really can exacerbate physical problems.

Jim