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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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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A few of you have shared here about some issues you've had related to nerve pain, swallowing and other symptoms. Wanted to see if you might provide us an update, as I feel it will benefit all the members in this conversation.

@scottjohnston00 – wondering what type of nerve pain you've had that has been helped by the gabapentin and Tapentadol (Nucunta)?

@jola65 – how did your follow-up appointment go?

@jager5210 – are you still having the swallowing difficulties?

@jcbonne1 – have you now had your swallow study? How about your neck and spine MRI?

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I had an MRI last week. The doctor ordered it with contrast. The doctor did not inform me of the risk with the contrast in that it has not been fully studied, may lodge in the brain and body and cause unknown side effects, etc. The MRI technician recommended against it unless she found a tumor. She didn't. The doctor said she could not determine anything since the contrast was not used. Therefore, $6,000.00 of insurance benefits down the drain.

My swallowing difficulties come and go but it is frightening. I have had swollen neck glands for 10 months, a stiff neck, and pain up the back of my head. I'm not sure what I'm going to do now in the fragmented approach by medicine.

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Hello, have you seen an ENT for your throat? Also the swallow test is a really good idea. I've had swallowing problems for over 5 years due to throat cancer. Take care and wishing you the best.

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It was an ENT doc who ordered the MRI

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@jager5210

It was an ENT doc who ordered the MRI

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Did u have the xray swallowing test?

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