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!

@lorirenee1

Hi again, I am so glad you have an answer to your saliva problem. Hopefully, the meds will help. You are very articulate in writing about the mental changes, and odd reactions to things. You could not have written better. Sometimes I think life is rather ludicrous, and that we can have odd reactions to things. Somehow, I did not even find your writing that you are gonna die now, as odd. Listening to Led Zeppelin and crying with joy is on the odd side, but who am I to say? Impulsive stealing and thoughts getting stuck in your head is scarey. I have the thoughts sometimes, and I even had to take meds for that at one time. Off them now. You sense the impulsive stealing is very wrong, and that is good. Justifying it is only human nature, but you are recognizing the oddness of the stealing, and that is good. I really would suggest a brain scan to rule out a physiological reason for some of the oddness. Do not start with any kind of therapist before you rule out brain problems. That is just my opinion. Also, please do not eat popcorn, unless it is hulled. That is horrible for diverticulitis. The kernels get stuck in your diverticula, and can cause pain. So eat only popcorn "puffs." You sound like a really nice, self aware, intelligent man. I wish you well in your health journey. No more stealing!!!! Keep me posted. Lori Renee

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@lorirenee1
I'd be crying too if I were listening to Led Zeppelin but not with joy, lol
Jake

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@jakedduck1

@lorirenee1
I'd be crying too if I were listening to Led Zeppelin but not with joy, lol
Jake

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Thanks Lori for the kind words! I did stop the stealing. I had a brain Mri I'm still trying to get my Neurologist to call me back to explain the results I wasn't able to get a follow up appointment until June 15t. I did get the place to email me the results which I've read several times and all I see is I gave mild this and moderate that, it doesn't say anything like severe or abnormal which I know sounds strange but I was hoping it would so at least I know what's going on.
Thank's as always for your input.
JC

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@lisalucier

@jcbonne1 – glad you are beginning to get some answers. That must feel good to be closing in on the problem and getting it treated.

About the impulsive behavior you mentioned: I know some medications can prompt that type of thing. What about asking your doctor if that could be a possibility for you?

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Hi Lisa I've been on the same meds for years

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@jcbonne1

Thanks Lori for the kind words! I did stop the stealing. I had a brain Mri I'm still trying to get my Neurologist to call me back to explain the results I wasn't able to get a follow up appointment until June 15t. I did get the place to email me the results which I've read several times and all I see is I gave mild this and moderate that, it doesn't say anything like severe or abnormal which I know sounds strange but I was hoping it would so at least I know what's going on.
Thank's as always for your input.
JC

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No, no! You don't want any severe brain, anything!!!! I understand the need for answers though. Believe me! June 15th, you will learn what the results actually mean. I guess you could have a severe case of intelligence. That does come from the brain! But nothing else!!!! Keep me updated. Lori Renee

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Hi Lori @lorirenee1 that was a typo on my part my Neurologist appointment isn't until July 15th. Yesterday I was optimistic that the meds were working the swallowing was easier and even the nerve pain was better. Today was awful my difficulties swallowing has reached the point where I have to violently spit to cough up the saliva. Also my Gastronogist who I don't have much confidence in told me the meds he prescribed would take 4 to 6 weeks to be effective earlier today I asked my long time pharmacist and he said they should give me immediate relief I also googled them and it said up to 30 to 60 minutes to work. It seems like these are some type of episodes the difficulty swallowing and nerve pain come in waves and also the last couple days my tongue feels thick and numb. I'm getting more and more out of breath. I'm really scared I'm going to suffocate and even though I was better yesterday it's getting worse because I can't even wear my denture for more than 5 minutes at a time before I'm gagging on it.Today while driving it came in waves and I had this weird need to grimace and purse my lips also I forgot to mention even though it's gotten more difficult since these symptoms started I have an easier time swallowing food than saliva.
I'm waiting for my insurance to approve seeing a Rheumatologist does anyone recommend any tests I should have or specialist to see besides the ones I've already seen and had. I'm getting desperate I don't want to live this…it's like being tortured! When I wake up I feel ok and then within an hour it starts. The shower droplets hurt my skin. Also I've noticed I'm increasingly doing this weird lip smacking.
Any advice would be very appreciated I don't know what to do.

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Also my throat is feeling more and more like theirs a wire wrapped around it that's getting tighter.

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@jcbonne1

Hi Lori @lorirenee1 that was a typo on my part my Neurologist appointment isn't until July 15th. Yesterday I was optimistic that the meds were working the swallowing was easier and even the nerve pain was better. Today was awful my difficulties swallowing has reached the point where I have to violently spit to cough up the saliva. Also my Gastronogist who I don't have much confidence in told me the meds he prescribed would take 4 to 6 weeks to be effective earlier today I asked my long time pharmacist and he said they should give me immediate relief I also googled them and it said up to 30 to 60 minutes to work. It seems like these are some type of episodes the difficulty swallowing and nerve pain come in waves and also the last couple days my tongue feels thick and numb. I'm getting more and more out of breath. I'm really scared I'm going to suffocate and even though I was better yesterday it's getting worse because I can't even wear my denture for more than 5 minutes at a time before I'm gagging on it.Today while driving it came in waves and I had this weird need to grimace and purse my lips also I forgot to mention even though it's gotten more difficult since these symptoms started I have an easier time swallowing food than saliva.
I'm waiting for my insurance to approve seeing a Rheumatologist does anyone recommend any tests I should have or specialist to see besides the ones I've already seen and had. I'm getting desperate I don't want to live this…it's like being tortured! When I wake up I feel ok and then within an hour it starts. The shower droplets hurt my skin. Also I've noticed I'm increasingly doing this weird lip smacking.
Any advice would be very appreciated I don't know what to do.

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Hi, @jcbonne1 – I'm sorry for all you are going through. Feeling like your throat has a wire wrapped around it must feel miserable. Sounds like the swallowing difficulty and nerve pain are plaguing, too. I'm wondering if perhaps @hopeful33250 or @jenniferhunter may have some thoughts on what you are experiencing as you try and get to some answers.

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@jcbonne1

Also my throat is feeling more and more like theirs a wire wrapped around it that's getting tighter.

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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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@jcbonne1

Hi Lori @lorirenee1 that was a typo on my part my Neurologist appointment isn't until July 15th. Yesterday I was optimistic that the meds were working the swallowing was easier and even the nerve pain was better. Today was awful my difficulties swallowing has reached the point where I have to violently spit to cough up the saliva. Also my Gastronogist who I don't have much confidence in told me the meds he prescribed would take 4 to 6 weeks to be effective earlier today I asked my long time pharmacist and he said they should give me immediate relief I also googled them and it said up to 30 to 60 minutes to work. It seems like these are some type of episodes the difficulty swallowing and nerve pain come in waves and also the last couple days my tongue feels thick and numb. I'm getting more and more out of breath. I'm really scared I'm going to suffocate and even though I was better yesterday it's getting worse because I can't even wear my denture for more than 5 minutes at a time before I'm gagging on it.Today while driving it came in waves and I had this weird need to grimace and purse my lips also I forgot to mention even though it's gotten more difficult since these symptoms started I have an easier time swallowing food than saliva.
I'm waiting for my insurance to approve seeing a Rheumatologist does anyone recommend any tests I should have or specialist to see besides the ones I've already seen and had. I'm getting desperate I don't want to live this…it's like being tortured! When I wake up I feel ok and then within an hour it starts. The shower droplets hurt my skin. Also I've noticed I'm increasingly doing this weird lip smacking.
Any advice would be very appreciated I don't know what to do.

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Hi J.C., It is amazing how much I can feel for a stranger. I feel so overwhelmed when I read your post, as I am helpless to really know what your problems are. One thing immediately does come to mind. I want to say that the lip smacking is tardive dyskenisia. The lip smacking is something you do when you have it. Basically, tardive dyskenisia is generally a reaction to certain meds. Tell your pharmacist this symptom, and what meds you are on, and he may be able to figure out what med is doing this to you. One thing I thought of is to boost your immunity taking powdered bone broth every day, It is really good for general immunity and healing stomach problems. You take the powder with vitamin c, so you can mix it with orange juice. Also, I was thinking you should drink kefir, a natural probiotic that is good for your digestive system. I am saying these things thinking that maybe boosting your health would be good. I also wonder if you should go to an infectious disease specialist. Thinking you may have an underlying infection. Wish I could be more helpful, but frankly, I don't know more….Keep me posted. Sorry you are so sick. Lori Renee

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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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