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!

Hi ! Ive got the same thing going on with me ! And i know about nerve pain i have it on my left side,bad headaches,neck pain,and spine pain! I'm so sorry for you cause I know how you feel! It's hard for other people to understand cause they can't see the pain! I was told I have Chiari malformation and the want to cut my head open to fix the headaches and a cyst in my spinal cord! I'm scared to death of surgery and u keep putting it off! I'll pray for you and please do the same for me

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@jcbonne1 I'm not sure how I ran across this discussion, but I wonder how the test you were scheduled on July 15 turned out.

I saw a speech therapist, and I was dubious about the point, but she recommended to my PCP that I have a couple of swallowing tests, which revealed a couple of causes of my difficulty with swallowing. I'm more careful about how I chew and swallow both liquid and solids.

I've had more tests for pn than for swallowing, and after seeing multiple specialists I now know that I have small fiber idiopathic peripheral neuropathy and the beginning stage of autonomic neuropathy. AN could be contributing to several issues with my vision, delayed signals from my spinal cord to my ear drums, falling for no apparent reason, bladder issues, ed, sudden random weakness in muscles, and svt. Specialists have said that all of those issues could be linked to AN.

I have esophageal dysmotility, disorganized motion at the back of my tongue and silent reflux, along with a bunch of other things not related to this discussion. The primary problem with pn is numbness, pins and needles and burning pain in my feet. The pins and needles go up to my knees.

I hope you have and will continue to diagnose the cause(s) of your difficulties. I certainly know how frustrating it is that the road to diagnosis and treatment can be long and rough.

Jim

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@jager5210

Hi Doc,

I read the disclosure about the contrast agent and it said exactly what I reported and the tech really did say what I said she did which I was thankful for. Maybe it's a new contrast agent. The disclosure did say that it could accumulate in the brain and body and that the long-term effects were unknown. I'm only a psychologist by training but I do understand the importance of your point and I would never communicate anything that was intended to mislead or might keep others from getting help they needed. I was dismayed that the doctor did not discuss this issue before the MRI. I guess the MRI did rule out a tumor but without the contrast the doctor said she could not determine if it was carotidynia, her suspicion.

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I posted on Wellstar's message board pretty much what I posted on this site. That MRI was on 6/22 I believe. Just the other day Wellstar refunded my $70 co-pay. How surprising is that?

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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.

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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.

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@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.

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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!

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Gladly. Thanks for posting.

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@jcbonne1, I wanted to check in to see how you are doing?

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