Complete spine pain

Complete spine pain

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KariRM1
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Joined: 05/13/2010 - 11:29am
Complete spine pain

I am looking for anyone who can help me understand why I would have chronic, intense pain throughout my entire spine, cervical, thoracic and lumbar.
I have 6 previous closed head injuries resulting in loss of consciousness, once at the bottom of a pool and had to be revived. I have had numerous negative MRIs, one provocative discogram at C5-C6, C6-C7.I have a diagnosis of TMJ, occipital neuralgia and persistent post concussion syndrome. And was previously diagnosed with thoracic outlet and carpal tunnel which has now been ruled out.
I also have severe migraines that have caused blind spots, dizziness and confusion. These headaches have been chronic for almost 20 years now and I am so used to the pain that the only symptoms I tend to acknowledge is the confusion, dizziness and fatigue. My neurologist calls these stroke like sypmtoms. They are worse with menstral cycles and pregnancies. I can become so disoriented that I can only crawl and am incomprehensible. So confused I have been a risk to myself and others at times by doing things ridiculously foolish. I find myself unable to recognize people I have known for months to years. My doctor says stress can cause all of this, but offered me no solutions.
I was able to function most days through all of this as severe symptoms were rare. When the economy failed I could not find any other job than as a CNA to support my 2 kids. After the first week I started to develop the severe debilitating back pain. I could not get out of bed except to force myself to work. The popping up and down my spine started. I changed to a less demanding health care center, but the pain persisted. I have popping when I rotate my shoulders and flex any part of my spine. X-Rays show muscle spasm but nothing else. I have incredible pain and cannot get out of bed most days.
I am so fed up with it. Need some serious help.

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happyHBmom
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Have you had EEGs? I am

Have you had EEGs? I am absolutely not a doctor, but used to have a boyfriend who had partial seizures that looked a lot like that (consequence of a brain injury), but I don't understand why after all those injuries nobody has suggested that?

Were I you I would be getting 2nd, 3rd, 4th, and 5th opinions from neurologists specializing in epilepsy, especially partial seizures.

KariRM1
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Joined: 05/13/2010 - 11:29am
full spine pain

Actually, my brother has complex partial seizures. Had them since birth. I have had an EEG done, but that was in 1998 and it didn't show anything. Regardless, it is true that I have been prescribed anti-seizure medication and it did help. I have taken Tegretol and Neurontin in the past. I took Neurontin for longer. After 6 months I noticed I was taking about a third of my emergency migraine medicine. I told my current doctor about this and he seemed unconvinced. Told me Neurontin shouldn't help my headaches because Occipital Neuralgia is basically a tension headache and Neurontin is for nerve damage. I said "Are you sure? Because I read somewhere that Occipital Neuralgia is the result of nerve damage at the base of the skull." He says "Well that too". So he finally agrees to prescribe me Neurontin. It will take awhile for it to help me, but last time I was free of the headaches for 5 years.
But, my real problem is my spine. I don't have one area that hurts. It is the total length of my spine. It is intense and unbearable. The neck has been a problem for decades. Numerous MRIs show nothing. But now it is the entire length of the spine. My less than interested doctor ordered an X-Ray of the thoracic and Lumbar Spine which showed muscle spasms he contributed to stress and sent me on my way. I have to keep begging him to run these tests and he keeps discrediting everything I say. I am changing my doctor Monday. I should have done it sooner, but I thought if he got to know me he would realize I am not faking this pain. I don't know why it isn't restricted to just one section of the spine, but the whole spine pops when I turn, twist or flex, and every day I have HORRIBLE pain in one section of my spine or another. I don't know why and my doctor isn't helping me figure it out. I was just praying someone else might know.

happyHBmom
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Well what you really need is

Well what you really need is another opinion. Nobody here can tell you what's wrong with you. We aren't doctors. It does sound like you're not communicating with yours, which means it's time to find another to talk to!

I'm concerned for you, I hope you figure it out soon!

optimist
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Last seen: 1 year 2 months ago
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Joined: 06/20/2008 - 3:32pm
Skepticism

I would be suspect of any doctor that said X-rays showed "spasms", that's a new one to me. Spasms can be easily felt on physical exam - but show up on X-ray? Really? The only thing I can think of that would cause pain the entire spinal length would be an irritation of the lining, like an arachnoiditis, a metastatic disease eating away the bone, which would show up on X-rays if not a bone scan (wouldn't have lasted for years - you'd be gone by now), or something along the lines of fibromyalgia. You need to go a good University/teaching hospital center. Keep us posted on what the next doctor thinks.

dilauro
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I didnt see where you mentioned

what doctors have been taking care of you.
I would look into seeing several. For starters a PCP who make best direct you into what specialist you should be seeing.

Based on your thread, it would be difficult to suggest one doctor over another. Since this has been going on for so many years, what doctors have you already seen and what has been their analysis , diagnosis and action plan for you

Ron DiLauro Spine-Health System Moderator
Dont laugh at me

happyHBmom
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Additionally, I'd be suspect

Additionally, I'd be suspect of any doctor who told you that a condition called occipital "neuralgia" is caused by tension and therefore not helped by medications that treat nerve pain.

But then again, you'll hear the repeated refrain "second opinion by a board certified specialist" here no matter what question you ask Smile