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!

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!

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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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The only thing that has helped me for nerve pain is high doses of Gabapentin ( 1200 mg. a day ), and NUCYNTA ( 500 mg. a day ). I hope this has been some help. Donald Johnston

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@scottjohnston00

The only thing that has helped me for nerve pain is high doses of Gabapentin ( 1200 mg. a day ), and NUCYNTA ( 500 mg. a day ). I hope this has been some help. Donald Johnston

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Hello @scottjohnston00, Welcome to Connect. Thank you for sharing what helps with your nerve pain. It's really helpful when members are able to see what others with similar symptoms are doing for treatments and learning what helps them.

Are you able to share a little more about your neuroopathy diagnosis and symptoms?

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Please keep us posted. I just had an MRI of my neck today. I've had swollen glands off and on, mostly on, for 9 months. At times I've had some difficulty swallowing and this scares me. I also have a very stiff neck which I can hardly move sometimes. At times my PN is quite severe but I refuse to take more than 600 mg of Neurontin at night, occasionally with some flexeril and street product. I was on 1600 mg of Neurontin for about 12 years and never felt well. I feel like I'm headed in your direction so if you would please share what Mayo finds, then perhaps I can share it with my docs although I've learned they don't care for this at all.

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Hi, I have high hopes that I get some help in Mayo
I will share whatever they find.

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@lorirenee1

Two things that come to mind for you to do are to go to a stomach doctor (Gastroenterologist), and have an upper GI, to see why you are having trouble swallowing. This is not a difficult test. You just swallow down some barium, and the doc watches your esophagus on a screen to see how your upper gastro system is working. Another thing that seems your neurologist should order is and EMG, to see how your nerves and muscles are working. Could your dentures be causing problems? Just thinking about saliva and dentures. I don't know anything about that. I pray you find some answers. My best to you. Lori Renee

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Great ideas!

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