It's Not GERD...It's Severe Motility Disease

[caramelsugarberry40]

For past 5 years I've been treated for severe GERD. I've been on everything from Prilosec, Nexium, Axid to Protonix. I've had every test known to man including 3 endoscopies (as recent as July 30th), Push Endoscopy, Pill Endoscopy, 3 Barium Swallows, CT Scans of my abdomen, and neck, etc...and just today after having 24 hr Ph monitoring, and Manometry it was found that I do not have GERD at all, but have severe motility dysfunction of my esophagus. My symptoms have always been feeling like food is getting stuck in my throat and eventually causing a throat infection requiring multiple courses of antibiotics. Lying down at night is a scary thought b/c I wake with throat irritation usually felt by most GERD sufferers who reflux stomach acids back into their throat upon lying dow. I just had my first bout of bronchitis in June which lasted 2 mths. ARGHHHHH.... I'm happy that I don't have to take the GERD meds anymore, but I want to be sure this diagnosis is right and the dilation procedure is the right way to go for me.

The only treatment suggested was balloon dilation. The specialist didn't feel Botox injection would be beneficial for me. This tx is supposed to work for about 6-12 months and then I may have to get it again. Does this sound accurate to anyone or does anyone know of a cure for this motility disorder?

[Lenore118]

OMG this all sounds like me.  I am a heart patient and the Cardioilogist wants a scope ASAP to see what next to bew done.  he said I may have to have a Heart Catherization to make sure it is not my heart.  IThis is all well and good but I feel it is my Esophagus and upper espogagus at that.  I also have severe sinuses.  It is hell to know which doctor to see first...ENT or Gastro doctor.  I had Aetna PPO for years but the company switched to Blue Cross Blue Shield and the best motility gastro doctor here in this city is not on Blue Cross. I do not want to go to any doo log figbi.  This gastro doctor reads all motilty studies for the other gastro doctors in this city,  I will take a balloon dilation yearly if it will give me relief.  I am basically house bound....The bubble type mucous is a nusiance and gets on my clothes....I am a mess (-:  I wish all those suffering better days ahead.

[selmaS]

Did u also try the elimination of wheat products?

"selma"

[caramelsugarberry40]

Thanks for your comments. Before I was dx, I went to an allergist b/c I was feeling like my throat was closing after my bronchitis. She thought my condition was eosinophilic esophagitis and she put me on an elimination diet from all dairy, tomatoes, and cheeses and eggs. I've been off of these things for 3 mths. The present GI doc hasn't suggested staying off of anything - only the esophageal dilation. But, tonight I just spoke to someone whose husband has the same problem including a severe case of acid reflux and she just said that this procedure is something they have to do every year. We laughted b/c they too had to lift the head of the bed for a long time just as I did. For me, raising the head of my bed didn't work, and neither did it for my friend's husband.

The area of motility dysfunction is my upper esophagus (throat).

[selmaS]

Hi....I know ur frustration in getting the correct dx and the meds......

were u told to avoid dariy products.....or to elevate the head of ur bed?

What area of motility disfunction do u have?

"selma"