1. < Neuropathy

Undiagnosed nerve pain

Posted by tararenee @tararenee, Dec 24, 2024

Greetings and merry Christmas,
At the end of October, my 10-year-old son started having a stabbing pain around his collarbone and lower neck and all the way up his spine. It’s been a debilitating pain that has caused him to be completely inactive. I live in the Midwest and I have seen ear nose throat G.I. and orthopedic and neurology. We have agreed at some type of neuropathy But his MRI results were normal and after one visit the neurologist has given up. I cannot really Get across the point of how much pain he is in, It wakes him from asleep. He cries and asleep., He can’t even enjoy a good meal without hurting. A little bit of background, my son was a competitive gymnast and a football player. He was the fastest kid in his grade and a running back, He doesn’t have a low pain tolerance. We are going on about 60 days of this pain and I cannot really find any correlations that make it better or worse except if he’s up doing things it gets way worse. I tried to get him into Rochester Mayo and they are not taking any new patients out of state for Neurology. I hope and pray that one of the other mayos will accept him as a patient. It’s a horrible feeling to watch a child suffer and have no answers. My biggest fear is that the mayo will not take us and I guess that is what I’m writing this post, I’ll have to begin a new search for a doctor that will look beyond the normal things. It’s been a lonely journey as doctors around here give up relatively easy. I’ve done some Some rare diseases take a few years to diagnose, I can’t imagine my son living in this pain for a few years. I am willing to take any advice that you guys have and I appreciate your time.

Interested in more discussions like this? Go to the Neuropathy Support Group.

windyshores | @windyshores | Dec 24, 2024

@tararenee I would think that competitive gymnastics and/or football could cause some problems. I am curious what you meant by "stabbing pain around his collarbone and lower neck and all the way up his spine." Specifically what did you mean by "all the way up his spine"? From lower back up, from shoulders up, from neck up?

Was the MRI of his neck? Does he ever have vertigo?

The pain sounds horrible.

I have pain from neck down shoulders and arm, down back, and up the side of my head and face with some numbness. Does he have any numbness? Is it one sided or all over?

I found an orthopedist who does not do surgery, who was helpful. PT has been helpful but mainly through manual work/massage. If you can find a neurologist or physiatrist (Pain management) they can be helpful.

One of my kids is a dancer and we found an expert doctor- and PT - for that area of practice. Can you find someone who specializes in athletics? Keep us posted!

REPLY
frances007 | @frances007 | Dec 25, 2024

Please check NORD website, as they have a lot of good Free info on rare diseaeses, if this happens to be the case for your son...great non profit.

REPLY
dlydailyhope | @dlydailyhope | Dec 25, 2024

@terarenee
Merry Christmas to you and your family/son.🎄

Has he had a MRI of his head/brain as well as his spine? Has he had extensive bloodwork done to check for anything off or autoantibodies? His perceptions of pain have definitely increased and it could be tied to sports, virus, autoimmune. Does he have pain beyond his spine like in his joints/arms/legs?

What happened right before his pain started? Was he playing a sport or doing something where he hurt himself? Has he ever had a concussion/hit his head? Was he sick with a virus?

I have spine and nerve issues so can relate with the pain. Did your son’s neurologist do any testing like EMG/nerve conduction studies? What does his pediatrician recommend? Have you considered taking him to a rheumatologist to rule out autoimmune issues? Pain management will treat pain but not get to the root cause of the pain. You really can’t treat pain properly without a diagnosis of the source of pain.

You may want to take videos of your son during pain episodes to show the doctors rather than only try to explain it. I have a 15 year old son who has had a couple concussions and has some health issues so can imagine how worried you must be.

I pray for you to get God’s guidance on where to take your son and finding the right doctors to diagnose/treat him. 🙏

REPLY
1 reply
tararenee | @tararenee | Dec 25, 2024
In reply to @dlydailyhope "@terarenee Merry Christmas to you and your family/son.🎄 Has he had a MRI of his head/brain..." + (show)
@dlydailyhope

@terarenee
Merry Christmas to you and your family/son.🎄

Has he had a MRI of his head/brain as well as his spine? Has he had extensive bloodwork done to check for anything off or autoantibodies? His perceptions of pain have definitely increased and it could be tied to sports, virus, autoimmune. Does he have pain beyond his spine like in his joints/arms/legs?

What happened right before his pain started? Was he playing a sport or doing something where he hurt himself? Has he ever had a concussion/hit his head? Was he sick with a virus?

I have spine and nerve issues so can relate with the pain. Did your son’s neurologist do any testing like EMG/nerve conduction studies? What does his pediatrician recommend? Have you considered taking him to a rheumatologist to rule out autoimmune issues? Pain management will treat pain but not get to the root cause of the pain. You really can’t treat pain properly without a diagnosis of the source of pain.

You may want to take videos of your son during pain episodes to show the doctors rather than only try to explain it. I have a 15 year old son who has had a couple concussions and has some health issues so can imagine how worried you must be.

I pray for you to get God’s guidance on where to take your son and finding the right doctors to diagnose/treat him. 🙏

Jump to this post

He did have a virus that started as a sore throat. A week later it became stabbing pain in the lower neck that travels up and around the spine. He legs and ankles have hurt and his face and body have been swollen. As far as injuries he did have a bad fall that knocked his tooth out and hurt his neck and body. That was 4months ago.
The neurologist did the physical screening and the mri of the brain. That’s where he stopped. Upon my request we tested for a few proteins in his blood that usually are markers for some autoimmune diseases.
But really the neurologist here is done testing we only had 1 visit and now he wants to treat for stress. He is just not listening that a healthy happy child is in debilitating pain. I was also thinking about a rheumatologist. They take months to get into here. I have noticed that pain medication doesn’t affect this pain. So I stopped giving it to him. I am also thinking of seeing another local neurologist. No one in my family has dealt with chronic pain so it’s been difficult on all of us to see him suffer and just be completely inactive due to pain.

REPLY
1 reply
westcom | @westcom | Dec 26, 2024

Do you have a University Medical School in your state? If yes, try there.

REPLY
smn1 | @smn1 | Jan 4 10:29pm
In reply to @tararenee "He did have a virus that started as a sore throat. A week later it became..." + (show)
@tararenee

He did have a virus that started as a sore throat. A week later it became stabbing pain in the lower neck that travels up and around the spine. He legs and ankles have hurt and his face and body have been swollen. As far as injuries he did have a bad fall that knocked his tooth out and hurt his neck and body. That was 4months ago.
The neurologist did the physical screening and the mri of the brain. That’s where he stopped. Upon my request we tested for a few proteins in his blood that usually are markers for some autoimmune diseases.
But really the neurologist here is done testing we only had 1 visit and now he wants to treat for stress. He is just not listening that a healthy happy child is in debilitating pain. I was also thinking about a rheumatologist. They take months to get into here. I have noticed that pain medication doesn’t affect this pain. So I stopped giving it to him. I am also thinking of seeing another local neurologist. No one in my family has dealt with chronic pain so it’s been difficult on all of us to see him suffer and just be completely inactive due to pain.

Jump to this post

Yes, dealing with schedulers, nurses as well as Drs. can be Unbelievably stressful. Your in a good place to try and get direction with your journey. And he certainly has enough symptoms that Someone should feel a sense of urgency... But that can be in short supply in our current world. Be that as it may, my Best advice. Is whenever You schedule an appt. particularly with specialists that are booked months out. Write this LARGELY on a piece of paper in front of You when you call to schedule the Appt., So you don't forget. Request to be put on a cancellation List, So that if anyone cancels you can be called and offered that Appt. I've had this work out wonderfully a couple times. As far as getting to see someone sooner. They weren't much help... But at least it has brought me further down the road. Best Wishes and a Solution to your current situation...

REPLY
cantab | @cantab | Jan 5 4:56am

Can’t the school help. They must deal a lot with problems their athletes have.

REPLY
Please sign in or register to post a reply.