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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@hopeful33250

Hello @jcbonne1

I'm glad that Lisa, @lisalucier, invited me to this conversation. I too am so sorry to hear of your swallowing difficulties. I have a paralyzed vocal cord and atrophy in both vocal cords and do have a difficult time, especially when I am tired, with swallowing and speech. It is very distressing and also frightening.

You do not mention seeing an otolaryngologist (this is an ENT doctor who specializes in the throat and vocal cords). If you have not consulted with this type of specialist it might be a good idea. You mentioned having Barrett's esophagus, which can also cause swallowing problems. Here is a link to some information regarding that, https://www.mayoclinic.org/diseases-conditions/barretts-esophagus/symptoms-causes/syc-20352841

Finally, I would strongly suggest that you ask for a referral to a speech pathologist. Speech pathologists are excellent resources for swallowing problems (as well as speech problems). They can offer you at-home exercises that will really benefit you. I see a speech pathologist at least yearly to keep up my vocal cord/swallowing strength.

Do you have any speech problems currently, or is it just swallowing problems? Have you seen an otolaryngologist yet?

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Hi hopeful thanks for your reply and I'm sorry you're also having health issues. I saw a ENT about 2 weeks he literally seemed to be using instruments from the 70's. The visit lasted 10 minutes if that, the longest portion of being taken up by a hearing test. He looked into my mouth said I had acid reflux and gave me a prescription for one of gerd meds my Gastronogist already prescribed and said come back in 3 months, also said my breathing was restricted which I am having a harder time to breathe. I was not impressed with him at all.

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@jcbonne1

Hi hopeful thanks for your reply and I'm sorry you're also having health issues. I saw a ENT about 2 weeks he literally seemed to be using instruments from the 70's. The visit lasted 10 minutes if that, the longest portion of being taken up by a hearing test. He looked into my mouth said I had acid reflux and gave me a prescription for one of gerd meds my Gastronogist already prescribed and said come back in 3 months, also said my breathing was restricted which I am having a harder time to breathe. I was not impressed with him at all.

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Hello @jcbonne1, I am sorry to hear that your experience with the ENT doctor was not helpful. It is important that your appointment be with an Otolaryngologist, a specific type of ENT that deals with vocal cord/swallowing problems. They can do an exam that places a tube down a nostril (it's really not as bad as it sounds as they numb the throat and nostril prior to the exam). Did you have that kind of exam?

Also, please ask for a referral to a speech therapist. They can be very helpful in dealing with swallowing difficulties.

As you mentioned breathing difficulties, I'm wondering if you have been seen by a pulmonologist? Also, a good neurologist might be able to sort out some of these symptoms that you are having. I encourage you to continue to advocate for yourself.

If you can seek out a second opinion at a multi-disciplinary health care center, like a university medical school or a Mayo facility, that would be a good option for you.

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@jcbonne1 My dad had issues with swallowing, but that was because of a head injury and he had to relearn how to swallow. He saw a speech therapist for that. One thought I have which you have not mentioned is being tested for Lyme disease. That being said, a lot of doctors use the western blot test for that which is not accurate. Better more accurate testing is from the Igenex lab and the doctors who understand how to treat and cure Lyme are in the ILADS group. Lyme can mimick a lot of diseases like MS or RA. It would be worth testing to rule it out or diagnose it and get help if that is the issue. The burning pains sure sound spine related to me. With the MRIs you have had of your spine, they should show something if there was a physical cause of a structural spine problem. I am a spine surgery patient and have experienced choking sensations and burning stabbing pains caused by spinal cord compression in my neck. A physical therapy evaluation might find some other causes, and my recommendation would be one is is an expert at myofascial release in case there are fascial restrictions causing pain. Here are some relevant links for you to check out.

Lyme disease https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/?pg=2#comment-304893

Myofascial Release https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/?pg=2#comment-304893

Igenex lab https://igenex.com/

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Thanks everyone for the encouraging thoughts the meds that my Gastronogist prescribed aren't helping. From my research a beta blocker would help reduce the production of my saliva but for some reason he makes excuses not to prescribe one so tomorrow I'm going to ask my GP to refer me to another one.
I have medi-cal which doesn't approve all the exams that I get referred for.
On a positive note my Neurologist did some nerve test and said I have issues with my neck which could be causing me some of my symptoms.
He said the Mri of my neck that I had done was just for soft tissue so he's referring me to get another neck and spine Mri.
I was reading an article that neck issues can cause the same type of swallowing problems I've been having! I pray to God that this is the solution I've been looking for!!!

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@jcbonne1

Thanks everyone for the encouraging thoughts the meds that my Gastronogist prescribed aren't helping. From my research a beta blocker would help reduce the production of my saliva but for some reason he makes excuses not to prescribe one so tomorrow I'm going to ask my GP to refer me to another one.
I have medi-cal which doesn't approve all the exams that I get referred for.
On a positive note my Neurologist did some nerve test and said I have issues with my neck which could be causing me some of my symptoms.
He said the Mri of my neck that I had done was just for soft tissue so he's referring me to get another neck and spine Mri.
I was reading an article that neck issues can cause the same type of swallowing problems I've been having! I pray to God that this is the solution I've been looking for!!!

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Hello jcbonne1. I am truly sorry for your problems, in particular since they are so widespread throughout your body, which makes finding a "specialist" so difficult.
I have read through most of your posts, and those of other who are trying to help.
Since this is a peripheral neuropathy forum, I am curious as to why you are posting here. The "nerve problems" you describe are not typical of PN, although as anyone who has it would agree, there are probably no really absolutely typical presentations of this maddening disease.
The answers you are getting, although certainly well meant, are all over the map, which relates to your widespread symptoms. I don't believe this is an appropriate way for you to get an "answer". All these suggestions, some of which are contradictory, will ultimately make you more confused. You also seem to be trying to hard to manage your own medical care.
Although not impossible, it is unusual for a person to develop so many problems related to so many body areas in such a short period of time. This may be why you cannot find one or even two specialists who can make a specific diagnosis.
I believe you need to find a generalist, such as a good internist, who will act as your navigator, referring you to appropriate specialists when indicated, and gathering up all the information in one place.
It is very difficult for anyone, even a medical professional, to diagnose an illness from afar. However, permit me to make an educated guess as to what may be some of your problem.
You describe a sensation of not being able to swallow, and sometimes, even to breathe. You also describe a strange reaction to listening to Led Zeppelin, who I assume you listened to when you were younger, which may be bringing up subconscious feelings of loss.
I believe you also described your heart racing.
All these can be symptoms of anxiety and panic attacks. There is a condition called "globus hystericus", which exactly describes your swallowing symptoms. One can have that and still have a more physical problem like Barrett's esophogitis.
When you feel like you can't swallow, are you breathing rapidly and experiencing a rapid heart beat (like 90-100 or more beats per minute)? If so, try to control your breathing, or even better, breath into a paper bag, and see what happens. Rapid breathing causes the blood to become too alkaline, which then triggers weird feelings all over your body.
Of course, you need to have the professionals rule out any physical problems before a psychological diagnosis is made. You certainly can have both. In fact, some physical problem may be triggering the psychological one.
Anxiety and panic attacks are treatable. So is Barrett's esophogitis, and divirticulosis. Don't give up hope!

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@jeffrapp

Hello jcbonne1. I am truly sorry for your problems, in particular since they are so widespread throughout your body, which makes finding a "specialist" so difficult.
I have read through most of your posts, and those of other who are trying to help.
Since this is a peripheral neuropathy forum, I am curious as to why you are posting here. The "nerve problems" you describe are not typical of PN, although as anyone who has it would agree, there are probably no really absolutely typical presentations of this maddening disease.
The answers you are getting, although certainly well meant, are all over the map, which relates to your widespread symptoms. I don't believe this is an appropriate way for you to get an "answer". All these suggestions, some of which are contradictory, will ultimately make you more confused. You also seem to be trying to hard to manage your own medical care.
Although not impossible, it is unusual for a person to develop so many problems related to so many body areas in such a short period of time. This may be why you cannot find one or even two specialists who can make a specific diagnosis.
I believe you need to find a generalist, such as a good internist, who will act as your navigator, referring you to appropriate specialists when indicated, and gathering up all the information in one place.
It is very difficult for anyone, even a medical professional, to diagnose an illness from afar. However, permit me to make an educated guess as to what may be some of your problem.
You describe a sensation of not being able to swallow, and sometimes, even to breathe. You also describe a strange reaction to listening to Led Zeppelin, who I assume you listened to when you were younger, which may be bringing up subconscious feelings of loss.
I believe you also described your heart racing.
All these can be symptoms of anxiety and panic attacks. There is a condition called "globus hystericus", which exactly describes your swallowing symptoms. One can have that and still have a more physical problem like Barrett's esophogitis.
When you feel like you can't swallow, are you breathing rapidly and experiencing a rapid heart beat (like 90-100 or more beats per minute)? If so, try to control your breathing, or even better, breath into a paper bag, and see what happens. Rapid breathing causes the blood to become too alkaline, which then triggers weird feelings all over your body.
Of course, you need to have the professionals rule out any physical problems before a psychological diagnosis is made. You certainly can have both. In fact, some physical problem may be triggering the psychological one.
Anxiety and panic attacks are treatable. So is Barrett's esophogitis, and divirticulosis. Don't give up hope!

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Thank's for your reply Jennifer, wouldn't Lyme disease show up on advanced blood work? Also I'd like to ask anyone who has experience with anxiety or panic disorders the following. Although it doesn't explain my nerve pain most of my friends think that my swallowing issues are being caused by serious anxiety.
Before I get into that though my Neurologist has referred me to get a swallow study he doesn't think my neck issues are causing my swallowing difficulties and although he said he needs confirmation from the results of the swallow study right now is almost certain that my swallowing issues and nerve pain are unrelated.
My friends say I'm a fairly tightly wrapped guy think that the swallowing problems are anxiety related.
In the past I've been to the ER several times
because I thought I couldn't breathe and was going to suffocate but I've never had swallowing issues before. I googled severe anxiety and it can cause hypersalivation, difficulty swallowing, feeling like your going to choke or die and pass out it also says it can cause hunger. During this whole time I get extremely hungry late at night and oddly enough I feel like eating when the swallowing gets bad. I do have difficulty swallowing food but some of the articles I've read I've read say it could also make swallowing food difficult further more I've read that anxiety can cause pins and needles pain which is how I describe my pain.
I'm having a hard time grasping the concept that I'm making myself sick and could use some feedback, I can't remember if I've mentioned that I'm also bipolar but have been stable for years with my meds thank you for any thoughts any of you might have!

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@jcbonne1

Thank's for your reply Jennifer, wouldn't Lyme disease show up on advanced blood work? Also I'd like to ask anyone who has experience with anxiety or panic disorders the following. Although it doesn't explain my nerve pain most of my friends think that my swallowing issues are being caused by serious anxiety.
Before I get into that though my Neurologist has referred me to get a swallow study he doesn't think my neck issues are causing my swallowing difficulties and although he said he needs confirmation from the results of the swallow study right now is almost certain that my swallowing issues and nerve pain are unrelated.
My friends say I'm a fairly tightly wrapped guy think that the swallowing problems are anxiety related.
In the past I've been to the ER several times
because I thought I couldn't breathe and was going to suffocate but I've never had swallowing issues before. I googled severe anxiety and it can cause hypersalivation, difficulty swallowing, feeling like your going to choke or die and pass out it also says it can cause hunger. During this whole time I get extremely hungry late at night and oddly enough I feel like eating when the swallowing gets bad. I do have difficulty swallowing food but some of the articles I've read I've read say it could also make swallowing food difficult further more I've read that anxiety can cause pins and needles pain which is how I describe my pain.
I'm having a hard time grasping the concept that I'm making myself sick and could use some feedback, I can't remember if I've mentioned that I'm also bipolar but have been stable for years with my meds thank you for any thoughts any of you might have!

Jump to this post

Hello, @jcbonne1 – sounds as though you are arising at some answers, which I hope is helpful to you. I wanted to encourage you to check out this Connect discussion on bipolar issues https://connect.mayoclinic.org/discussion/bi-polar-issues. Thought you might like to read what some of the members there have written and perhaps participate in that discussion, too.

When will you do the swallow study?

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@jcbonne1

Thank's for your reply Jennifer, wouldn't Lyme disease show up on advanced blood work? Also I'd like to ask anyone who has experience with anxiety or panic disorders the following. Although it doesn't explain my nerve pain most of my friends think that my swallowing issues are being caused by serious anxiety.
Before I get into that though my Neurologist has referred me to get a swallow study he doesn't think my neck issues are causing my swallowing difficulties and although he said he needs confirmation from the results of the swallow study right now is almost certain that my swallowing issues and nerve pain are unrelated.
My friends say I'm a fairly tightly wrapped guy think that the swallowing problems are anxiety related.
In the past I've been to the ER several times
because I thought I couldn't breathe and was going to suffocate but I've never had swallowing issues before. I googled severe anxiety and it can cause hypersalivation, difficulty swallowing, feeling like your going to choke or die and pass out it also says it can cause hunger. During this whole time I get extremely hungry late at night and oddly enough I feel like eating when the swallowing gets bad. I do have difficulty swallowing food but some of the articles I've read I've read say it could also make swallowing food difficult further more I've read that anxiety can cause pins and needles pain which is how I describe my pain.
I'm having a hard time grasping the concept that I'm making myself sick and could use some feedback, I can't remember if I've mentioned that I'm also bipolar but have been stable for years with my meds thank you for any thoughts any of you might have!

Jump to this post

@jcbonne1 Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.
https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/

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Hey go to the Mayo Clinic have a complete work up. My wife went to doctor after doctor all over New York nobody could diagnose her with the type of neuropathy she had. We went to Mayo Clinic in Jacksonville Florida and Dr Shah finally gave her a true diagnosis.

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Hi I’m happy for her hopefully now she can get the right treatment.
Do you mind telling me her symptoms and what was the diagnosis.
I’m going to Mayo next week for my evaluation with big hope that they gonna be able to help me I’ve been suffering with neuropathy but almost 10 years and now it’s progressively worse than it was ever been I also have electric current like to add to my body fatigue and brain fog so appreciate the feedback and any advice as a first visit?

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