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gpants
@gpants

Posts: 3
Joined: Oct 21, 2017

Considering a visit to Mayo for throat symptoms (most likely LPR)

Posted by @gpants, Oct 24, 2017

Hi, I’ve been battling throat symptoms for several years now and have had little success correcting the issue through diet/lifestyle changes, or PPIs. I’ve had a barium study and endoscopy, and have been diagnosed w esophogitis, reflux and LPR. I’m considering an (out of pocket) visit to Mayo, in the hopes of confirming/denying the diagnosis as LPR, and coming up with a treatment plan.

For the record, specific symptoms include persistent phlegm, especially low in throat, difficulty swallowing, soreness and swollen feeling at base/back of tongue, sore throat, soreness on front of neck, voice fatigue, globus sensation, hoarseness, and occasional breathing trouble. Symptoms are worse in the daytime, especially after eating. I do not generally have heartburn or blatant regurgitation. I also have some Auto-Immune issues including Addison’s Disease, for which I’ve been on low-dose steroids for 15 yrs, and more recently Undifferentiated Connective Tissue Disease. Not sure if there’s any connection to the throat issues; my current doctors don’t communicate with each other, and nobody has been able to make any clear connection.

I wanted to ask if anyone can recommend any specific doctor or doctors at Mayo. I’m not finding any doctors on the Mayo site who specifically mention LPR as a specialty, but I know the GI clinic is very highly regarded. LPR still seems to be seen as somewhat of a fringe diagnosis in establishment medicine; if I spend a significant amount of money out of pocket to visit Mayo, I want to feel certain that the doctors there won’t attempt to lump this in as standard GERD, and will work to truly understand what’s going on, as well as be open to a variety of treatment approaches. Does anyone have specific experiences visiting Mayo for LPR or a similar situation?

THANK YOU IN ADVANCE!

REPLY

Which Mayo Clinic? I go to the one in Jacksonville FL. My last visit was in July. I saw Dr. Francis and her NP. I was having a lot of trouble swallowing again and lots of thick phelgm. Dr Wang did an endoscopy and they dilated my esophagus again. I was diagnosed with Barrett’s Esophagus. They found mucus in my throat that contained stomach acid. They increased Prilosec to twice a day and that has helped a lot. They did not say LPR or GERDs in voice or in documents. Just said my esophagus is just not functioning well. Food sticks in my throat and most often right before entering my stomach and it backs up. Usually it the food just comes back up, but I sometimes cough or vomit it up. This blog post has a little of my journey.. a basic outline: http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

Welcome to Mayo Clinic Connect, @gpants and @fourof5zs! We are so glad to have you both join this community.

@gpants, 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. When you call, the appointment coordinators will ask questions to help direct you to the best specialist.
Mayo Clinic has 140 digestive disease specialists on staff, one of the largest such groups in the world. Because of the complexity of digestive diseases, Mayo Clinic doctors collaborate as team members. At Mayo Clinic, you don’t get just one opinion, you get multiple opinions.

We have several discussions on Connect which you may wish to view:

– Laryngo-pharyngeal reflux – made a decision to visit the Mayo Clinic https://connect.mayoclinic.org/discussion/hello-ive-made-a-decision-to-visit-the-mayo-clinic-in-a/
– Laryngopharyngeal Reflux (LRP) – severity and outlook? https://connect.mayoclinic.org/discussion/laryngopharyngeal-reflux-lrp-severity-and-outlook/
–Does surgery work for LPR https://connect.mayoclinic.org/discussion/does-surgery-work-for-lpr/

@fourof5zs, thank you so much for sharing your insights. I’d like to introduce you, and @gpants to a few members who have posted about LPR, and Barrett’s Esophagus. Please meet @bpositive, @hyunolyu1, @cowboy1997, @kaystrand, @ptfitzy, @cab26, @davearnatt, @dancemom57, @boogirl, @dandl48, @robbinr, @pauletta, @nanny23, @l3440r @jafd and @waterboy. I’m certain fellow Connect members will join in with their thoughts.

@gpants, certain medications can irritate the lining of your esophagus, causing an increase in the severity of reflux; have you asked your doctors about the possibility of this link?
@fourof5zs, may I ask how long you may have to be on Prilosec? I’m glad you’re finding some relief.

@fourof5zs

Which Mayo Clinic? I go to the one in Jacksonville FL. My last visit was in July. I saw Dr. Francis and her NP. I was having a lot of trouble swallowing again and lots of thick phelgm. Dr Wang did an endoscopy and they dilated my esophagus again. I was diagnosed with Barrett’s Esophagus. They found mucus in my throat that contained stomach acid. They increased Prilosec to twice a day and that has helped a lot. They did not say LPR or GERDs in voice or in documents. Just said my esophagus is just not functioning well. Food sticks in my throat and most often right before entering my stomach and it backs up. Usually it the food just comes back up, but I sometimes cough or vomit it up. This blog post has a little of my journey.. a basic outline: http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

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Ah-forgot to mention, would be the Rochester location. Thanks for the info @fourof5zs ! Good god, it sounds like you’ve been through an awful lot-glad to hear you’ve found a little bit of improvement w the Prilosec!

@kanaazpereira

Welcome to Mayo Clinic Connect, @gpants and @fourof5zs! We are so glad to have you both join this community.

@gpants, 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. When you call, the appointment coordinators will ask questions to help direct you to the best specialist.
Mayo Clinic has 140 digestive disease specialists on staff, one of the largest such groups in the world. Because of the complexity of digestive diseases, Mayo Clinic doctors collaborate as team members. At Mayo Clinic, you don’t get just one opinion, you get multiple opinions.

We have several discussions on Connect which you may wish to view:

– Laryngo-pharyngeal reflux – made a decision to visit the Mayo Clinic https://connect.mayoclinic.org/discussion/hello-ive-made-a-decision-to-visit-the-mayo-clinic-in-a/
– Laryngopharyngeal Reflux (LRP) – severity and outlook? https://connect.mayoclinic.org/discussion/laryngopharyngeal-reflux-lrp-severity-and-outlook/
–Does surgery work for LPR https://connect.mayoclinic.org/discussion/does-surgery-work-for-lpr/

@fourof5zs, thank you so much for sharing your insights. I’d like to introduce you, and @gpants to a few members who have posted about LPR, and Barrett’s Esophagus. Please meet @bpositive, @hyunolyu1, @cowboy1997, @kaystrand, @ptfitzy, @cab26, @davearnatt, @dancemom57, @boogirl, @dandl48, @robbinr, @pauletta, @nanny23, @l3440r @jafd and @waterboy. I’m certain fellow Connect members will join in with their thoughts.

@gpants, certain medications can irritate the lining of your esophagus, causing an increase in the severity of reflux; have you asked your doctors about the possibility of this link?
@fourof5zs, may I ask how long you may have to be on Prilosec? I’m glad you’re finding some relief.

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Thanks for all the info @kanaazpereira. I did check out those other threads. I made two calls to the scheduling dept last week. On the second call, I was informed that if I book an appointment w a GI, he/she could treat THESE symptoms: esophogitis, LPR, difficulty swallowing), but NOT THESE symptoms: fatigued voice, mucous, sore throat, globus. If I wanted treatment for the latter, I’d need to see a different doctor. This seems REALLY bizarre to me, and counter to the whole point of trying to visit a place like Mayo-that the body should be viewed as a system, and not as a collection of separate pieces that obey the lines drawn by our medical specialty classifications.

I was also told in my first call (last Tues) that several specific doctors had appointments available in Dec. I researched the doctors and decided to book an apt w a Dr David Katska. When I called back the next morning (Wed), I was told the ONLY appointment in GI was in mid-Jan with the “Gonda continuity clinic” (????) and an unspecified doctor (????). This plus the extreme oddity of splitting up symptoms caused me to not move ahead with booking an appointment that day.

I haven’t asked docs about medications that could be making things worse. I do have Addison’s disease and take very low-dose steroids. All my doctors are aware that I’m on that and have never mentioned it as a concern. (For unrelated reasons) I also tried injectable steroids instead of oral for a couple months and it did not seem to help my throat symptoms. I agree it may be worth further investigation though. Thanks for raising that point.

@kanaazpereira

Welcome to Mayo Clinic Connect, @gpants and @fourof5zs! We are so glad to have you both join this community.

@gpants, 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. When you call, the appointment coordinators will ask questions to help direct you to the best specialist.
Mayo Clinic has 140 digestive disease specialists on staff, one of the largest such groups in the world. Because of the complexity of digestive diseases, Mayo Clinic doctors collaborate as team members. At Mayo Clinic, you don’t get just one opinion, you get multiple opinions.

We have several discussions on Connect which you may wish to view:

– Laryngo-pharyngeal reflux – made a decision to visit the Mayo Clinic https://connect.mayoclinic.org/discussion/hello-ive-made-a-decision-to-visit-the-mayo-clinic-in-a/
– Laryngopharyngeal Reflux (LRP) – severity and outlook? https://connect.mayoclinic.org/discussion/laryngopharyngeal-reflux-lrp-severity-and-outlook/
–Does surgery work for LPR https://connect.mayoclinic.org/discussion/does-surgery-work-for-lpr/

@fourof5zs, thank you so much for sharing your insights. I’d like to introduce you, and @gpants to a few members who have posted about LPR, and Barrett’s Esophagus. Please meet @bpositive, @hyunolyu1, @cowboy1997, @kaystrand, @ptfitzy, @cab26, @davearnatt, @dancemom57, @boogirl, @dandl48, @robbinr, @pauletta, @nanny23, @l3440r @jafd and @waterboy. I’m certain fellow Connect members will join in with their thoughts.

@gpants, certain medications can irritate the lining of your esophagus, causing an increase in the severity of reflux; have you asked your doctors about the possibility of this link?
@fourof5zs, may I ask how long you may have to be on Prilosec? I’m glad you’re finding some relief.

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@gpants Interesting but tough notes, but that’s the way Mayo works. I went to AZ to be tested for Amyloidosis, and spent 3 months and 3 weeks being tested for everything else by about 30 different doctors. Some were good, and some were not. They found nothing they thought was significant. On my last day there, I finally got to see a hematologist, and turns out he knew next to nothing about Amy. Sounds to me like you have an over-supply of eosinophils in your windpipe and esophagus, “eosinophilic esophagus”. For your mucus, Mucinex is good, but Walmart’s 88 cent mucus control is better and much cheaper.

Hi @gpants,

I’m sorry to hear that you had difficulties receiving an appointment; it sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic.
Unfortunately because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need, and over the last few years, we’ve experienced unusually high demand for appointments, which has exceeded our capacity. We are in the process of addressing this issue.

With regard to seeing different doctors, I do believe that with symptoms of fatigued voice and other vocal dysfunction, the Clinic may want to refer you to an ear, nose and throat specialist to look at your vocal cords to be sure there is no other abnormality. I’d like to introduce you to @jamienolson, who is the moderator for the Ear, Nose & Throat group on Connect; Jamie would you have any more insight for @gpants?

May I also suggest reading some of the Visiting Mayo Clinic discussions, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ which has some incredible suggestions and information. Please let us know if you have any further questions, and I wish you all success.

@fourof5zs

Which Mayo Clinic? I go to the one in Jacksonville FL. My last visit was in July. I saw Dr. Francis and her NP. I was having a lot of trouble swallowing again and lots of thick phelgm. Dr Wang did an endoscopy and they dilated my esophagus again. I was diagnosed with Barrett’s Esophagus. They found mucus in my throat that contained stomach acid. They increased Prilosec to twice a day and that has helped a lot. They did not say LPR or GERDs in voice or in documents. Just said my esophagus is just not functioning well. Food sticks in my throat and most often right before entering my stomach and it backs up. Usually it the food just comes back up, but I sometimes cough or vomit it up. This blog post has a little of my journey.. a basic outline: http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

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I have gone through a lot and I know there is more down the road. ☹️ Looking through some of the discussions on here other people have gone and are going through some really rough stuff too.

Liked by dandl48

@kanaazpereira

Welcome to Mayo Clinic Connect, @gpants and @fourof5zs! We are so glad to have you both join this community.

@gpants, 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. When you call, the appointment coordinators will ask questions to help direct you to the best specialist.
Mayo Clinic has 140 digestive disease specialists on staff, one of the largest such groups in the world. Because of the complexity of digestive diseases, Mayo Clinic doctors collaborate as team members. At Mayo Clinic, you don’t get just one opinion, you get multiple opinions.

We have several discussions on Connect which you may wish to view:

– Laryngo-pharyngeal reflux – made a decision to visit the Mayo Clinic https://connect.mayoclinic.org/discussion/hello-ive-made-a-decision-to-visit-the-mayo-clinic-in-a/
– Laryngopharyngeal Reflux (LRP) – severity and outlook? https://connect.mayoclinic.org/discussion/laryngopharyngeal-reflux-lrp-severity-and-outlook/
–Does surgery work for LPR https://connect.mayoclinic.org/discussion/does-surgery-work-for-lpr/

@fourof5zs, thank you so much for sharing your insights. I’d like to introduce you, and @gpants to a few members who have posted about LPR, and Barrett’s Esophagus. Please meet @bpositive, @hyunolyu1, @cowboy1997, @kaystrand, @ptfitzy, @cab26, @davearnatt, @dancemom57, @boogirl, @dandl48, @robbinr, @pauletta, @nanny23, @l3440r @jafd and @waterboy. I’m certain fellow Connect members will join in with their thoughts.

@gpants, certain medications can irritate the lining of your esophagus, causing an increase in the severity of reflux; have you asked your doctors about the possibility of this link?
@fourof5zs, may I ask how long you may have to be on Prilosec? I’m glad you’re finding some relief.

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@kanaazpereira , Thank you for the welcome and sorry I have been so long in acknowledging. We kept out 4 1/2 & 3 year old granddaughters and the younger one had the sniffles. Their mom said it is just allergies… it turns out it was a head cold. My husband and I have it. Mine is winding down and he is a couple of days behind me. Of course the sinus drainage and coughing have done their damage to my esophagus and stomach despite meds to calm them.

I have been on Nexium or Prilosec… usually the geneic for them since the late 1990s. I cannot remember exact year. My brain does not operate that well anymore. I have tried other ones over the years too. My husband is retired Army and we get our meds at the local Marine base which is supplied by the Navy. The pharmacy here is small and the generic for Prilosec is what I have been on since July because it is the cheapest for their formulary. I am on 40 mg twice a day and it was helping until this cold came along. I am taking a little bit of stor brand version if Mylanta to help sooth them.

@gpants Just a note to mention a couple disorders which can trigger throat and voice and even tongue issues. Excess Eosinophils. Light chain amloidosis, multiple myeloma. Allergies. Air pollution.

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