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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@jenniferhunter

Clayhere,
I think a neurology appointment is a step in the right direction. Has anyone looked at any possible spine issues? I had a lot of choking sensations from a ruptured disc and the associated muscle spasms with it in my neck for a few years before I found out about my spine issues. It caused me to loose my lordotic curve in my cervical spine. I had pain in the shoulder blades, and a lot of spine patients say that too. If you have a forward head position and the front of your chest is tight, it's going to pull on the shoulder blades in back which will cause pain. There could be a postural difference with your spine that could contribute. If there is any instability, it may be different when standing vs laying down, and full body spine X rays could show that. You'd need an MRI to show disc problems. I do have chest tightness from thoracic outlet syndrome. Stabbing pains in your arms can be from nerve entrapment anywhere along the nerve path from the spine to your hand. It could be the spinal cord, where the nerves exit the spine, thoracic outlet syndrome compression between the collar bone and chest, nerve compression in the elbow, carpal tunnel, etc. What you might want to do is find a dermatome map of he body online and print it out. Then diagram exactly where your pain is and what type of pain. Use different colors and symbols for stabbing, sharp, dull, tingling, numbness, etc. Do that every day and look for a pattern and if the pain changes location and write down what you are doing and what position your body and limbs are in when you feel this. Take that with you when you see the neurologist. You might want a physical therapy evaluation too if you can tolerate it. The physical therapist would focus on muscle tightness that could contribute. Does changing your posture and standing up straight with shoulders back change the pain? Have you ever had a whiplash injury? Does bending your neck change any pain? I've had all the symptoms you're describing and a lot of it was due to spinal cord compression from bone spurs with a ruptured disc causing pain all over my body. Tingling in your legs and feet can also be caused by spinal cord compression in the neck. I had that and pain all over my body from cervical stenosis and spine surgery fixed all of it. A lot of surgeons were confused by this and wouldn't help me, 5 in fact, so that is why I came to Mayo and my surgeon was familiar with this type of problem. I found medical literature that described unusual cases like mine and I sent that in when I asked for an appointment. It was frustrating and wasted 2 years while I was getting worse and loosing muscle mass to atrophy when no surgeon would help me because they didn't understand the problem and they expected different symptoms to match my spine imaging. I am rebuilding some of that now, but it is very slow to come back, and I'm regaining strength slowly. make a list of questions you want to ask the neurologist. If you do find literature that seems to match your symptoms, take that with you. It's great that you are researching literature. I figured out why my case was different and brought that hunch to Mayo and I was right. I think patients can have a lot of insight this way if you understand the medical literature well enough. I have a biology degree, so that helps , and I look up everything on my medical records to learn from it and what my doctors were thinking. Let the doctor make the diagnosis, but use your knowledge to direct questions toward what you think may be wrong.

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Replies to "Clayhere, I think a neurology appointment is a step in the right direction. Has anyone looked..."

Hello Jennifer
I have seen several Neurologist each one says something different seen three at Mayo. The one here said its my heart my Cardiologist says it ain't my heart. I do have several bulging disc C3,C4,C5,C6 and something going on at T10,T11. They tell me they dont think thats my problem. My family Dr keeps saying nephropathy. I have to agree it is something to do with my spine but all the test is not showing anything to warrant a diagnosis. I have seen Neurologist, Lung Dr, Cardiologist, Gastrologist , Pain Dr. They can not come up with a diagnosis. The Drs at Mayo couldnt find any answers they told me I was in the 10 to 12% of the unknown. It doesnt matter what position I am in the pain and pressure comes and goes. The pressure on my chest is constant and gets worse with any activity . The sharp stabbing pains hit at anytime no matter what I am doing. Laying down can cause it to get worse but getting still and resting it will ease up. I do know lifting makes my chest hurt as well in between my shoulder blades. I have asked about a pet scan on my heart and a Hyda scan on my bladder and was told I didn't need one.