@clayhere, Please forgive me, but may I just please yell at someone? Your post says the doctors can't find what is wrong. Yet when you ask for two tests you are told you don't need them. What's the matter? Aren't the doctors getting paid enough to give you the tests? If you're on Medicare, didn't their financial office "contract" enough payment for the tests? Or are they afraid the tests will show something they hadn't thought of and be embarrassed for their oversight? Again, please forgive me, clayhere. What your post describes is very similar to what I've been going through and I just finally had to get it out. Good luck, Friend. @cognac

Hello Clay,
You do have a lot of spine issues. Who said that the spine wasn't the problem and what was their specialty? I think you need a spine neurosurgeon opinion on that. I had only one bad disc that was collapsed down about 50% and it caused pain all over my body and you have a lot more discs involved. How old is the imaging? Have these symptoms become progressively worse over time? For me prior to spine surgery, when I laid on my back, my pain got worse in my legs. I also had stabbing pains in my arms that increased with activity, and I was at the point then, that there was no space left around my spinal cord. If I bent my neck, I had an electric bolt type pain down my entire body. Have you had any epidural injections to your spine? I did, and it took away all the pain in my body that was everywhere which was temporary. If you have had that same experience, that is the clue that spine surgery could fix that. Have you seen a neurologist in the spine center at Mayo? I could also suggest that you could send your spine imaging to my surgeon. He would look at that and evaluate if he thought this was spine related and it doesn't cost anything to do that. The neurologist I saw in the spine center and the neurosurgeon had slightly different opinions, and the surgeon didn't promise to fix my pain, but because I had worked with my physical therapist and knew the progression, I knew my symptoms were from the bone spurs advancing in the central canal, and I saw the bones spurs double in volume within 9 months on MRI. This is called funicular pain or tract pain when it is referred somewhere else that expected based on imaging. There is no test for it, but my surgeon knows this is possible, and he had me as a patient and saw another example of this when his surgery fixed all of the pain, and I think this confuses a lot of specialists. I think because it changes when you lay down, that might be because of some instability that could be putting pressure on your spinal cord if the vertebra is slipping. That happened to me because of 2 mm of backward slipping at the site of the ruptured disc. These are the kinds of clues that can help diagnose your case and you should write down everything because you'll forget something crucial when you're at appointments. You have enough spine conditions to warrant an evaluation with a spine surgeon. I was turned down by 5 spine surgeons who misunderstood my case, and they could not connect my leg pain to my cervical spine injury. I spent 2 years trying to find a surgeon to help me before coming to Mayo and just getting worse. It was because I read the papers from my future Mayo spine surgeon that mentioned leg pain with cervical stenosis and it had the term "funicular pain" and I looked that up, that I found the medical literature with the unusual spine cases like mine. I found this right after Surgeon #5 refused to help me, and I tried to get my other doctors to approach him with the literature on my behalf and none would. I knew he'd made a mistake, but no one would tell him. That is why I contacted this surgeon at Mayo, and came here, and his surgery was magic and it gave me my life back. The spinal cord is highly organized, like a conduit of electric wires with different purposes. Everything comes from the brain down to the body through the spinal cord and messages go back up through the cord to the brain. So squashing the cord anywhere, might damage the one wire that is going to the place you have pain or a massive muscle spasm. You can also have the nerves getting compressed where they exit the spine through the foramen at the nerve roots which is the space in-between each vertebral body. This pain would follow the dermatome map and be predictable because it is the specific nerve to supply a specific organ. The pain coming from squishing the spinal cord isn't very predictable since it's hard to pinpoint which wire it is. You can also have other compressions of nerves in the body adding more issues to the mess. My neurologist didn't think my MRI looked very bad, but the neurosurgeon thought I should have surgery and offered it to me. If you put a neck brace on to immobilize the neck, would your symptoms get any better? I'll post the link to the study I found. I think your symptoms can be explained by this kind of spine problem. I would encourage you to send your spine imaging for evaluation, and if you would like to do that with my Mayo neurosurgeon, I'll make the connection for you. You might need some current imaging of the entire spine to evaluate this. They did that for me at Mayo. The bone spurs can grow pretty fast around a ruptured disc, and you have multiple levels that could be causing this. It's hard to be the patient who is unusual when no one is thinking outside the box. Surgeons have to be careful and don't want to have a bad outcome, and if they are not confident, I wouldn't want them to operate on me. That's what makes this hard for both the doctors and patients. Here is the Case Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/

@clayhere Listen to @cognac. There are many so-called doctors who refuse to order necessary tests. There are about 10 tests that would resolve my diagnostic problems complete, but the whole clinic of medics refuse to order them because they have never ordered them before. One MD refused to order a simple blood test because he "did not understand the disease completely." Crap. If that were legitimate, none of us would ever have married. https://bit.Ly/1w7j4j8

@clayhere, my friend, You name a bunch of the elements I am faced with. Right down the list, I would wager you have some form of Amyloidosis. Go to Mayo-MN, or Boston Gen, or MD Anderson-Houston. But forget your locals. They won't help, except to clean out your billfold.