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!

Liked by Leonard

I am so sorry for your symptoms. My only suggestion is to get a MuSK antibody test as MG presents itself with difficulty swallowing and neuropathy . MG isn't painful though, it causes numbness. It doesn't explain your pain.

Liked by jcbonne1

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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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@Erinmfs

I am so sorry for your symptoms. My only suggestion is to get a MuSK antibody test as MG presents itself with difficulty swallowing and neuropathy . MG isn't painful though, it causes numbness. It doesn't explain your pain.

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Thanks for your reply what is MG

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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

Jump to this post

Thank you Lori I had a endoscopy is a upper GI different? I did some research on poor fitting dentures and barely worn them since last night my swallowing has improved by about 50%

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@jcbonne1

Thanks for your reply what is MG

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MG is myasthenia gravis, its an autoimmune disease that can weaken different muscles, including swallowing. I've had trouble swallowing with MG and it is scarey. http://www.myasthenia.org and http://www.myastheniagravis.org are 2 foundations out there with websites that describe the condition. its also described on mayo's website at https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

it's possible to have trouble swallowing without droppy eyelids.

Liked by Lisa Lucier

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@jcbonne1

Thank you Lori I had a endoscopy is a upper GI different? I did some research on poor fitting dentures and barely worn them since last night my swallowing has improved by about 50%

Jump to this post

Hi again! No, an upper GI and an endoscope are the same. Go get an endoscope! It really is not a big deal to do. Just drink a lot of water to rid yourself of the barium afterwards. Also, being that the saliva improved by 50%, go to your dentist and talk to him about your dentures. They may not fit properly. Or perhaps, he may have other ideas about your saliva. He could definitely check your salivary glands. Anyway, best of luck, and I hope you get answers. No fun at all being sick. Keep me posted! Lori Renee

Liked by Jennifer Hunter

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Thanks Lori I'm getting the results of my endoscopy and colonoscopy tomorrow and I'm about to make an appointment with my dentist now, yes I will.

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@Erinmfs

MG is myasthenia gravis, its an autoimmune disease that can weaken different muscles, including swallowing. I've had trouble swallowing with MG and it is scarey. http://www.myasthenia.org and http://www.myastheniagravis.org are 2 foundations out there with websites that describe the condition. its also described on mayo's website at https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

it's possible to have trouble swallowing without droppy eyelids.

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Thanks Erin, how would I get tested for that? Rheumatologist?

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@jcbonne1

Thanks Lori I'm getting the results of my endoscopy and colonoscopy tomorrow and I'm about to make an appointment with my dentist now, yes I will.

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Very good! Best of luck to you! Lori Renee

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I went to see my Gastronogist today and he said I have Barrett's esophagus and Diverticulitis. He said the Barrett's is what's causing my difficulty swallowing and gave me 4 meds and told me I needed to stop caffeine, dairy and wheat which is fine if I'm no longer feel like I'm getting waterboarded throughout the day. He said it would take 4 to 6 weeks for the meds and diet changes to bring me back to normal swallowing. He also said I have Diverticulitis and he needs to perform another colonoscopy. He also didn't seem to think that theses 2 conditions cause my nerve pain.
I have a feeling it has something to do with my brain and nerves.
For example after my visit with my Gastronogist I was grateful that finally a condition was found for my difficulty swallowing and relieved. Then as I'm driving to the pharmacy the difficulty swallowing my saliva hits me hard I think I'm going to choke at the same time I'm having difficulty breathing my tongue and lips feel numb and at times I feel like I'm going to pass out while driving and then I almost smile in a weird way and think ok I guess I'm going to die today like it's a joke. I've had these weird and inappropriate thoughts when my symptoms started 4 months ago. When I would be at my worst in terms of choking and barely to breathe I get these weird reactions.
Also I've been reflecting on how I started to mentally change 18 months ago I'm not sure if it's significant or signifiers anything but here goes.
About 18 months ago when some of my favorite Rock songs would play on the radio I would start crying about how happy I was. I use to never do that and were talking hard rock songs like Led Zeppelin multiple times throughout the day I would start to cry when a particular song came on because I was over come with happiness in retrospect that seems weird. Then I started engaging in impulsive behavior. I started stealing cookies from a market, then designer T-shirts and socks from a department store. I'm 57 years old the last time I stole something was candy when I was like 11. I would justify these actions by saying since I never had a rebellious youth I was rebelling now. That also seems strange now. Plus at times I have a certain repetitive thought I can't get rid of. Lastly when the choking feeling first started happening I felt like I had to suppress a smile, as if choking would make me smile.
Please I'm very open to anyone's feedback, thanks.

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@jcbonne1

I went to see my Gastronogist today and he said I have Barrett's esophagus and Diverticulitis. He said the Barrett's is what's causing my difficulty swallowing and gave me 4 meds and told me I needed to stop caffeine, dairy and wheat which is fine if I'm no longer feel like I'm getting waterboarded throughout the day. He said it would take 4 to 6 weeks for the meds and diet changes to bring me back to normal swallowing. He also said I have Diverticulitis and he needs to perform another colonoscopy. He also didn't seem to think that theses 2 conditions cause my nerve pain.
I have a feeling it has something to do with my brain and nerves.
For example after my visit with my Gastronogist I was grateful that finally a condition was found for my difficulty swallowing and relieved. Then as I'm driving to the pharmacy the difficulty swallowing my saliva hits me hard I think I'm going to choke at the same time I'm having difficulty breathing my tongue and lips feel numb and at times I feel like I'm going to pass out while driving and then I almost smile in a weird way and think ok I guess I'm going to die today like it's a joke. I've had these weird and inappropriate thoughts when my symptoms started 4 months ago. When I would be at my worst in terms of choking and barely to breathe I get these weird reactions.
Also I've been reflecting on how I started to mentally change 18 months ago I'm not sure if it's significant or signifiers anything but here goes.
About 18 months ago when some of my favorite Rock songs would play on the radio I would start crying about how happy I was. I use to never do that and were talking hard rock songs like Led Zeppelin multiple times throughout the day I would start to cry when a particular song came on because I was over come with happiness in retrospect that seems weird. Then I started engaging in impulsive behavior. I started stealing cookies from a market, then designer T-shirts and socks from a department store. I'm 57 years old the last time I stole something was candy when I was like 11. I would justify these actions by saying since I never had a rebellious youth I was rebelling now. That also seems strange now. Plus at times I have a certain repetitive thought I can't get rid of. Lastly when the choking feeling first started happening I felt like I had to suppress a smile, as if choking would make me smile.
Please I'm very open to anyone's feedback, thanks.

Jump to this post

@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?

REPLY
@jcbonne1

I went to see my Gastronogist today and he said I have Barrett's esophagus and Diverticulitis. He said the Barrett's is what's causing my difficulty swallowing and gave me 4 meds and told me I needed to stop caffeine, dairy and wheat which is fine if I'm no longer feel like I'm getting waterboarded throughout the day. He said it would take 4 to 6 weeks for the meds and diet changes to bring me back to normal swallowing. He also said I have Diverticulitis and he needs to perform another colonoscopy. He also didn't seem to think that theses 2 conditions cause my nerve pain.
I have a feeling it has something to do with my brain and nerves.
For example after my visit with my Gastronogist I was grateful that finally a condition was found for my difficulty swallowing and relieved. Then as I'm driving to the pharmacy the difficulty swallowing my saliva hits me hard I think I'm going to choke at the same time I'm having difficulty breathing my tongue and lips feel numb and at times I feel like I'm going to pass out while driving and then I almost smile in a weird way and think ok I guess I'm going to die today like it's a joke. I've had these weird and inappropriate thoughts when my symptoms started 4 months ago. When I would be at my worst in terms of choking and barely to breathe I get these weird reactions.
Also I've been reflecting on how I started to mentally change 18 months ago I'm not sure if it's significant or signifiers anything but here goes.
About 18 months ago when some of my favorite Rock songs would play on the radio I would start crying about how happy I was. I use to never do that and were talking hard rock songs like Led Zeppelin multiple times throughout the day I would start to cry when a particular song came on because I was over come with happiness in retrospect that seems weird. Then I started engaging in impulsive behavior. I started stealing cookies from a market, then designer T-shirts and socks from a department store. I'm 57 years old the last time I stole something was candy when I was like 11. I would justify these actions by saying since I never had a rebellious youth I was rebelling now. That also seems strange now. Plus at times I have a certain repetitive thought I can't get rid of. Lastly when the choking feeling first started happening I felt like I had to suppress a smile, as if choking would make me smile.
Please I'm very open to anyone's feedback, thanks.

Jump to this post

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

REPLY
@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?

Jump to this post

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

Liked by Lisa Lucier

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