1. < Neuropathy

Nerve pain and difficulty swallowing: I could really use some help

Posted by jcbonne1 @jcbonne1, Jun 2, 2019

3 months ago I started having a very hard time swallowing my saliva, sometimes I think I'm going to choke and suffocate on it and I'm gasping for air. I have awful crawling pins and needles pain all over my body and at times a stabbing electric type of terrible pain that can occur on my penis, genitals and especially my rectum.
I feel like my throat is in a vice and being squeezed tightly.
The other main areas of pain are my chest, abdomen, spine, shoulder blades, right, knees and the arches of both feet.
I've had the following test that revealed no abnormalities.
Chest X-ray, Mri of brain, spine, neck, shoulder, arm and knees.
CBC including what Neurologist described as advanced blood work. A endoscopy and colonoscopy.
I would so appreciate any guidance on what I should do in terms of other specialists I should see, other tests I should have performed also what can I do myself to help with this nerve pain and difficulty swallowing. I'm really at my wits end I don't want to life like this.
I also forgot to mention I'm constantly spitting and now I have to violently spit while removing my upper denture to get it all out. When I feel like I might not be able to swallow my saliva I start gasping for air I also find myself being out of breath more often.
Thanks any info would be much appreciated!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 28, 2019

Hello @jcbonne1,

I agree with @jimhd regarding seeing a speech pathologist. They are just great in dealing with swallowing problems. They are extremely knowledgeable in speech as well as all areas of the throat. Swallowing problems and neurological problems tend to go together. Also, have you visited an otolaryngologist?
These are ENT doctors who have special training in swallowing and vocal cord problems. Do you have any speech problems?
Looking forward to hearing how you are doing.

REPLY
jager5210 | @jager5210 | Aug 28, 2019

So sorry to hear you are experiencing such horrible symptoms. I write because I seem to be moving in your direction especially with the mouth and throat issues. Would you mind giving a bit more of your background as to what age range you're in, how and when did this begin, any antecedent events like toxic exposure, vaccines, medications for other issues, family history etc. Anything that others can connect with to provide some thread for possible inquiry by the medical community would be helpful in my opinion.

REPLY
1 reply
resawaller | @resawaller | Aug 28, 2019
In reply to @jager5210 "So sorry to hear you are experiencing such horrible symptoms. I write because I seem to..." + (show)
@jager5210

So sorry to hear you are experiencing such horrible symptoms. I write because I seem to be moving in your direction especially with the mouth and throat issues. Would you mind giving a bit more of your background as to what age range you're in, how and when did this begin, any antecedent events like toxic exposure, vaccines, medications for other issues, family history etc. Anything that others can connect with to provide some thread for possible inquiry by the medical community would be helpful in my opinion.

Jump to this post

I do have problems swallowing,I choke to get a pill down! I was told.it was the Chiari doing it , and I it would improve after surgery! I'm 54 yr old, and never really been sick before these problems! It doesn't run in my family either! I'm stuck with this problem alone! Pray for me , surgery in sept 4th!

REPLY
lostinspace25 | @lostinspace25 | Mar 15, 2022

Hello, I've had difficulty swallowing for about 2 years now going on 3. It was very sudden and I never had any other problems before that. This happens everytime I eat although there are things that are harder/easier to eat than others, I've also somewhat adpated the way I eat so I don't choke but it's still a problem.

I've done pretty much every test that they've had:
-Upper endoscopy
-Esophageal manometry
-Barium swallow
-Video Fluoroscopic Swallowing Exam

All these tests have come back normal. The only thing they found was a that I had a hypertensive upper esophageal spincter. All they want to do is use a balllon to widen the esophagus but that doesn't really tell me what's wrong in the first place. None of the medications they've given me have helped like anti acids etc.

I've also had a lot of other symptoms. I have constant IBS problems, numbness and tingling in my hands and feet and sometimes I even wake up with half my body numb, although that subsides with time and I just generally feel bad all together. I almost forgot to add but I sometimes have muscle weakness too.

They did a nerve study on me to see if I had something else but all they found was carpal tunnel. Now my PCP has said that we've exhausted all the exams having to do with my esophagus / digestive system and just sent me home with nothing but anti acids that don't even work. They aren't willing to recommend me to a neurologist. This is the second PCP that I've had that basically just dropped me and basically shrugged their shoulders. Now I don't know what to do or where to go because the only other test left are neurology but because they doubt that it could be that they aren't willing to send me. Any advice?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 16, 2022
In reply to @lostinspace25 "Hello, I've had difficulty swallowing for about 2 years now going on 3. It was very..." + (show)
@lostinspace25

Hello, I've had difficulty swallowing for about 2 years now going on 3. It was very sudden and I never had any other problems before that. This happens everytime I eat although there are things that are harder/easier to eat than others, I've also somewhat adpated the way I eat so I don't choke but it's still a problem.

I've done pretty much every test that they've had:
-Upper endoscopy
-Esophageal manometry
-Barium swallow
-Video Fluoroscopic Swallowing Exam

All these tests have come back normal. The only thing they found was a that I had a hypertensive upper esophageal spincter. All they want to do is use a balllon to widen the esophagus but that doesn't really tell me what's wrong in the first place. None of the medications they've given me have helped like anti acids etc.

I've also had a lot of other symptoms. I have constant IBS problems, numbness and tingling in my hands and feet and sometimes I even wake up with half my body numb, although that subsides with time and I just generally feel bad all together. I almost forgot to add but I sometimes have muscle weakness too.

They did a nerve study on me to see if I had something else but all they found was carpal tunnel. Now my PCP has said that we've exhausted all the exams having to do with my esophagus / digestive system and just sent me home with nothing but anti acids that don't even work. They aren't willing to recommend me to a neurologist. This is the second PCP that I've had that basically just dropped me and basically shrugged their shoulders. Now I don't know what to do or where to go because the only other test left are neurology but because they doubt that it could be that they aren't willing to send me. Any advice?

Jump to this post

Hi @lostinspace25, welcome. I'm sorry to hear that you feel that your doctors have run out of options for you. While fellow patients like the members here on Mayo Clinic Connect are not able to diagnose, we may be able to help you figure out what questions to ask.

I have moved your post to this existing discussion called:
- Nerve pain and difficulty swallowing: I could really use some help https://connect.mayoclinic.org/discussion/hi-i-could-really-use-some-help/

Click the link to see the posts from the beginning where @jcbonne1 describes a situation with simularities to yours. He receives a lot of great tips from others that you may benefit from.

You may also be interested in these related discussions:

- How Neuropathy has impacted swallowing https://connect.mayoclinic.org/discussion/how-neuropathy-has-impacted-swallowing/
- Swallowing and digestive problems https://connect.mayoclinic.org/discussion/swallowing-and-digestive-problems/
- Achalasia https://connect.mayoclinic.org/discussion/achalasia/

Have you seen an ENT specialist or a speech pathologist?

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