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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 4 days ago | Replies (6026)

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@dianecostella

Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility issues since 2014. I was recently diagnosed with mild esophageal dysmotility. Has anyone else ever been diagnosed with this and if so what was the treatment.

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Replies to "Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility..."

Hello @dianecostella, There is another discussion you might find helpful that includes esophageal dysmotility as one of the pieces of CREST Syndrome - https://connect.mayoclinic.org/discussion/crest-syndrome/. @jimhd may also be able to share some information or suggestions with you.

Until others are able to respond to your question, here is some information I found that might be helpful.
"What is the treatment for esophageal dysmotility? Achalasia may be treated with drugs that relax smooth muscle and prevent spasm, such as isosorbide dinitrate or nifedipine. Pneumatic dilation is a procedure that dilates the LES with a high-pressure balloon." --- FAQs about Swallowing Disorders | Johns Hopkins: https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/swallowing_disorders.html

Hello, @dianecostella I've had esophogeal dysmotility for several years. (I also have mild autonomic neuropathy, but severe idiopathic axonal demylenating small fiber polyneuropathy - quite a mouthful.) I had a few appointments with a speech therapist, who gave me some exercises and a list of helpful hints about swallowing safely. It can be pretty annoying, and sometimes even scary. I'd recommend a visit with a speech therapist as a first step. Don't be put off by the title, "speech therapist". She was a good specialist who explained things well, referred me for a few swallowing tests, and provided resources. Some days I don't even think about it, but I guess that some of the things she taught me have become automatic. I take smaller bites, chew very well, avoid foods that are problematic, and wait until I've swallowed food completely before taking another bite. It used to help get food all the way through the lower esophogeal sphincter if I chased it with a sip of liquid, but now liquids can be as risky as solids. I drink small sips, first taking a breath, sip, hold it in my mouth, tuck my chin, then swallow. More often than not, if I forget to tuck my chin, especially when I'm drinking the last of the liquid, I start to aspirate, and that sets off a coughing spree. Fortunately, I've never actually blocked my airway, but I know it happens.

Can you ask your doctor to refer you to a speech therapist? I'd be interested to know of any coping strategies you've tried. Isn't it frustrating to see our bodies misbehaving? If you want me to say more, be sure to put my name, with the @, in the text of your message - @jimhd.

Jim