Nerve pain and difficulty swallowing: I could really use some help

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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.

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.

@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.

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.

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.

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?

Hi ! Ive got the same thing going on with me ! And i know about nerve pain i have it on my left side,bad headaches,neck pain,and spine pain! I'm so sorry for you cause I know how you feel! It's hard for other people to understand cause they can't see the pain! I was told I have Chiari malformation and the want to cut my head open to fix the headaches and a cyst in my spinal cord! I'm scared to death of surgery and u keep putting it off! I'll pray for you and please do the same for me

@jcbonne1 I'm not sure how I ran across this discussion, but I wonder how the test you were scheduled on July 15 turned out.

I saw a speech therapist, and I was dubious about the point, but she recommended to my PCP that I have a couple of swallowing tests, which revealed a couple of causes of my difficulty with swallowing. I'm more careful about how I chew and swallow both liquid and solids.

I've had more tests for pn than for swallowing, and after seeing multiple specialists I now know that I have small fiber idiopathic peripheral neuropathy and the beginning stage of autonomic neuropathy. AN could be contributing to several issues with my vision, delayed signals from my spinal cord to my ear drums, falling for no apparent reason, bladder issues, ed, sudden random weakness in muscles, and svt. Specialists have said that all of those issues could be linked to AN.

I have esophageal dysmotility, disorganized motion at the back of my tongue and silent reflux, along with a bunch of other things not related to this discussion. The primary problem with pn is numbness, pins and needles and burning pain in my feet. The pins and needles go up to my knees.

I hope you have and will continue to diagnose the cause(s) of your difficulties. I certainly know how frustrating it is that the road to diagnosis and treatment can be long and rough.

Jim

I posted on Wellstar's message board pretty much what I posted on this site. That MRI was on 6/22 I believe. Just the other day Wellstar refunded my $70 co-pay. How surprising is that?