esophageal dysmotility

I usually post on the arthritis forum, but I think many of you may have some answers to this question. What treatments do you use for esophageal dysmotility? I was diagnosed with this 3.5 years ago when I had my first upper endoscopy. My GI doctor started me on reglan before meals, in addition to PPIs, and pretty much said best of luck. I've been researching this, though, because I've recently had problems with my lungs. Pulmonologist thinks it may be due to severe acid reflux, or in my case because I take the PPIs, severe nonacid reflux. I stopped taking reglan a couple of years ago because another doctor told me it wasn't a good drug to take long-term. the information I've gleaned from the internet indicates that esophageal dysmotility is a chronic life-long problem that normally progresses through the years. It is a condition that must be followed, but I've had no one follow it. The GI doctor that diagnosed it pretty much blew me off. But if it's causing problems in my lungs, it needs to be addressed. I'm already taking PPIs plus zantac before bed, and initiating the behavioral measures (no food 3-4 hours before bedtime). Short of surgery, which may actually worsen the dysmotility, what else can you do for it? Should I be followed by a GI doctor?

I also have autoimmune problems (undifferentiated connective tissue disease). Should I try to find a doctor that is willing to investigate whether I have primary esophageal dysmotility or secondary (associated with CTDs)? My mother had esophageal dysmotility secondary to mixed connective tissue disease.

Thanks for any information at all!

Elcamino

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Current dx: Rheumatoid Arthritis

Just wanted to say sorry that you're feeling so bad.
There is an association between GERD and Asthma. I would suggest maybe talking to an asthma specialist. I always sleep with 2-3 pillows behind me to keep the reflux down during the night, might help you if you've not tried it. These are about the only suggestions I'd make to you.
No one said life was going to be easy, but I sure could do without all these nightmares and if it makes sense it's probably wrong.
Hope you feel better soon and keep us posted!
Get well

Thanks for your reply. I do sleep with 2-3 pillows already; haven't been able to sleep flat for years. I have further testing set up with the pulmonologist (pulmonary function test, cat scan); perhaps he could address my questions. I haven't had great luck with GI doctors so far.

Elcamino

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Current dx: Rheumatoid Arthritis

Wish I could help. I don't really know. It is amazing to me that a lot of GI doctors don't seem to be very imaginative and or focused on more than there specific concerns. Hard to think out of the box. Do you have any research hospitals in your area? It might be useful to see someone at one of them.

Have you tried an acid reflux, or wedge, pillow? It works better than 2-3 pillows and raises the head up more. I sometimes wake up with a crick in the neck, but it works. I have had asthma since childhood and always used multiple pillows. The wedge pillow works well. The only downside is that it's a pain when your head is on a totally different level than your spouse's. :-(

I also remember another thread recently about esophageal exercises. As I recall it's basically lying flat and raising your head (only) so you can see your feet. Apparently there is some new work on building up the muscles in the esophagus. It sounds like your condition requires more than this, but it can't hurt to find the thread.

Good luck.

I've never heard of an acid reflux pillow. Sounds intriguing. Thanks.

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Current dx: Rheumatoid Arthritis

Talk to your gastro doctor; my gastro doctor suggested mine. I got a prescription when I bought mine several years ago at a medical supply store. As a result my insurance helped pay for the cost. (I'm not really sure as to the cost now.)

Frankly I don't use it all the time. I seem to go in cycles. When things go downhill, either due to more acid or a a chest cold, etc., I use the pillow.

Good idea mlp, do a search for it elcamino: acid reflux pillows here on healingwell (I just found it0 so you can see them. they also have beds that could elevate you if that would be better. Wow all these resources, At least maybe take a look and then bring it up with your doctor (a prescription would help) as to which might be better for you the pillow or bed!!!
As always keep us posted and hope you'll feel better soon
Good luck