Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

You responded to the wrong “expert” – I have no idea either what it is or what it’s connected to … I asked the question – what is it?

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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I do not use any Beta Blockers

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@jimhd
Good info! I have an appt with my Motility Gastro Dr but not til Dec. I’ve been dealing with this problem for YEARS! THEY finally did the 24 hr Manometry and PH study tests and that’s how they found out. I was just told yesterday. I have been struggling with the choking on food, liquid or saliva (aspirating too) for years! It’s very scary when I catch this, choke and can’t catch my breath as I’m choking! Tell me on please, which specialists other than the Speech one, should I be seeing? The one I have is INEFFECTIVE ESOPHAGIAL MOTILITY.

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My neurologist suggested increasing my Gabapentin, 300mg,to three times daily, up from two times. 600mg doses are more common she said.

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@ujeeniack

My neurologist suggested increasing my Gabapentin, 300mg,to three times daily, up from two times. 600mg doses are more common she said.

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@ujeeniack , I’m now taking Gabapentin, 600 mg three times a day. Still have a lot of numbness and pain, but sleeping better

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I’m taking 1800mg of gabapentin daily for cramping, tremor and paresthesia. It helps and fortunately I have no side effects other than drowsiness. It also dulls my lower back pain.

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@gailfaith

That issue hasn’t come up yet, so I don’t know. It’s not something I would choose to do.

Jim

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@magg

I’m taking 1800mg of gabapentin daily for cramping, tremor and paresthesia. It helps and fortunately I have no side effects other than drowsiness. It also dulls my lower back pain.

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@I also took 1800mg abstention daily plus the Fentanyl pain patch and was practically comatose. I had the same symptoms you do but although I got good relief and could sleep, I was unable to function. My doc cut dose in half but have much less relief. I also received a neurostimulator a few years ago.

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@ujeeniack

My neurologist suggested increasing my Gabapentin, 300mg,to three times daily, up from two times. 600mg doses are more common she said.

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@So glad you are sleeping better. Neuropathy pain is agony!

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@ujeeniack

My neurologist suggested increasing my Gabapentin, 300mg,to three times daily, up from two times. 600mg doses are more common she said.

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@You were on a rather low dose of abstention, and I hope a higher dose is helping you.

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@darlia

I’m not familiar with “ineffective”. The doctors I’ve seen are the neurologist, the speech therapist (pathologist) and two ENT doctors. The neurologist has suggested a specialist neuronasopharyngologist, which is a neurologist/ENT. That would mean an overnight trip to OHSU, in Portland. I live in central Oregon, close to many good medical services, but not all of them. And a long way from the nearest Mayo.

Things I do to be safe: drink small sips, inhaling first; eat small bites and chew well and long; try to lubricate the food; do focused swallowing; wait for it to move down, chasing it with a sip of liquid; then on to the next bite, etc. Sometimes, it takes 2 or 3 swallowing motions to create the necessary pressure in my esophagus.

My sister had severe swallowing issues, had Botox injections, surgeries, and then couldn’t swallow at all, and had a peg tube. She would vomit at any food smell, so her husband cooked on his high end grill outside. She couldn’t go to a restaurant, something they did a lot before her illness. An army of doctors never were able to make a diagnosis, and she died a few years ago. Of my 5 siblings, she was the closest to me, and it’s still a big loss. Because I have some of the same problems as she, I know I worry that I’m headed down the same road.

Sorry. None of that was anything near encouraging.

I assume you’ve had head MRIs and CTs. One thing I learned is that I have silent reflux, which means asymptomatic. It happens without me knowing it. Interesting.

I think I’ve googled just about everything I came across, and continue to do so. The doctors know that I understand what they’re saying, and I want all the details. Sometimes I feel badly about seeing some of them so often because I know they don’t get rich off Medicare patients. I’m just thankful for them all.

Jim

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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Thanks!

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