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!

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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@jager5210

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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Hi jager5210
This disease is maddening, even for medical professionals. I am both.
Please don’t take offense; i often feel the way you do.
However, i don’t believe your post is helpful for others in the same situation.
Your analysis of the dangers of contrast material is simply wrong. It doesn’t get stuck anywhere in your body, it has been well studied, and the side effects are not unknown.
Contrast is often used, particularly when a tumor is possible. If the tech really did what you say, he/she should be fired. They are not supposed to decide whether or not to use contrast, and certainly not make a diagnosis.
Current medicine does not have a lot to offer to us with this disease. Most professionals are doing the best they can.

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@jeffrapp

Hi jager5210
This disease is maddening, even for medical professionals. I am both.
Please don’t take offense; i often feel the way you do.
However, i don’t believe your post is helpful for others in the same situation.
Your analysis of the dangers of contrast material is simply wrong. It doesn’t get stuck anywhere in your body, it has been well studied, and the side effects are not unknown.
Contrast is often used, particularly when a tumor is possible. If the tech really did what you say, he/she should be fired. They are not supposed to decide whether or not to use contrast, and certainly not make a diagnosis.
Current medicine does not have a lot to offer to us with this disease. Most professionals are doing the best they can.

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Hi Doc,

I read the disclosure about the contrast agent and it said exactly what I reported and the tech really did say what I said she did which I was thankful for. Maybe it's a new contrast agent. The disclosure did say that it could accumulate in the brain and body and that the long-term effects were unknown. I'm only a psychologist by training but I do understand the importance of your point and I would never communicate anything that was intended to mislead or might keep others from getting help they needed. I was dismayed that the doctor did not discuss this issue before the MRI. I guess the MRI did rule out a tumor but without the contrast the doctor said she could not determine if it was carotidynia, her suspicion.

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@jager5210

Hi Doc,

I read the disclosure about the contrast agent and it said exactly what I reported and the tech really did say what I said she did which I was thankful for. Maybe it's a new contrast agent. The disclosure did say that it could accumulate in the brain and body and that the long-term effects were unknown. I'm only a psychologist by training but I do understand the importance of your point and I would never communicate anything that was intended to mislead or might keep others from getting help they needed. I was dismayed that the doctor did not discuss this issue before the MRI. I guess the MRI did rule out a tumor but without the contrast the doctor said she could not determine if it was carotidynia, her suspicion.

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@jager5210 @jeffrapp I'd like to offer a bit of input from my personal experience. I did have an MRI with contrast which was gadolinium several years ago. At the time, I questioned the safety of it and was told to drink a lot of water, and at that time they said it should be OK unless a patient has kidney disease. About ten years later, I had a blood test when my doctor was testing for metals in my body, and the gadolinium is still there and was the highest level of any metals that were found in my body. I'm not aware of any problems related to this.

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Thanks Jeff for the reply. I do not recall if that was the substance but the disclosure I had to sign indicating that I had been informed as to that possibility also indicated the contrast had not been studied to determine if there are long term effects. After Vioxx and Levaquin, I decided to take the techs recommendation and not do it particularly since I didn't have a tumor. What is infuriating about my experience is that the doctor did not adequately explain what carotidynia is. She said was out of pamphlets. It didn't sound too serious, just painful. I read the ENT's report after the MRI and she said she was unable to make a determination as to the presence of carotidynia since a contrast was not used and that if my 10 months of discomfort continues, I should see a chiropractor. Never did she mention there is a risk of sudden blindness even though I've reported for 2 years that my eyes go in and out of focus frequently, another issue I thought might be related to PN.

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You have a lot going on. I too had difficulty swallowing coupled with a very high fever. I'm not sure if you've had your CPK levels checked. I have myositis and I know it will cause difficulty swallowing. I wish you the best.

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@taylordmitri

You have a lot going on. I too had difficulty swallowing coupled with a very high fever. I'm not sure if you've had your CPK levels checked. I have myositis and I know it will cause difficulty swallowing. I wish you the best.

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Hi, @taylordmitri – welcome to Mayo Clinic Connect. Sounds like you are familiar with what @jcbonne1 and others have talked about with swallowing difficulties from your own experience.

You talked about having a doctor check the creatine phosphokinase (also known as creatine kinase, CPK, or CK) levels. Is this test the one that helped arrive at your diagnosis of myositis, or inflammatory muscle pain? Did you have symptoms for quite some time before a diagnosis was made?

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