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cervical "nerve damage"? - disability??

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Unread 08-24-2007, 12:20 AM   #1
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Unhappy cervical "nerve damage"? - disability??

I have a problem, and may possibly need an alternate diagnosis. I am really frustrated and tired at this point. After 17 years of chronic pain and degenerative symptoms, I was diagnosed with Chronic Myofascial Pain (CMP) and possible "nerve damage" last year (whatever that means - "nerve damage"?). This was when I was working full-time and had health insurance. I am now a full-time college student with no insurance. I never found out where this suspected "nerve damage" was, so the only diagnosis I have is CMP. I have all of the following symptoms and more, getting progressively worse since I was around 12 years old:

-extremely stiff neck with very limited movement, for 17 YEARS
-constant but migrating pain in my upper back, shoulders, and chest muscles (sometimes it is on the right, sometimes the left). This is NOT "burning" pain, or like pin pricks or needles, it is acute "STABBING" pain, sometimes feeling as if it is deep in the bone itself, I don't know how else to describe it.
-severe difficulty sleeping because of stabbing pains in back
-migraines (headaches with nausea and dizziness), severe light sensitivity
-chronic "frozen shoulder"
-chronic attacks of what one Dr. called hyperesthesia (a feeling like all of my hair follicles are being rubbed the wrong way, extremely sensitive to anything touching me, or even a breeze against my skin)
-extreme muscle weakness in my arms and legs
-inability to grip a pencil tightly enough to write legibly (I tested negative for carpal tunnel, but I knew that wasn't the problem, anyways. Pfffft.)
-sudden muscle spasms and severe twitches, causing me to drop things, knock things over, and sometimes to become temporarily disoriented (this is mortifying, I am only 30 years old!)
-short term memory loss becoming progressively worse, I am often going into different rooms of the house and have no recollection of why I am there or what I was looking for, as if I was senile.
-a general...fogginess? I was always an A student when I was younger, in the top 1% of the U.S. on all standardized tests, in honors classes, started college at 15, etc., but I feel as if my IQ has dropped significantly. I have trouble focusing on more than one thing at once, and remembering the simplest words, whereas I used to be like a dictionary.
-very poor judgement of distances (I walk into things even in my own apartment, despite the fact that they have been in the same spot for years, and I had a really hard time in driver's school, eventually giving up on it altogether).
-shaking/twitching while my body is at rest. My hands shake pretty badly, and I spill things WAY too often.
-slurring/stuttering/stumbling over my words, whereas I used to be very eloquent.
-narcolepsy...? (uncontrollable sleepiness, nodding off despite trying desperately to fight it off, blacking out at inappropriate times. It is like I can't get a deep enough breath of air, and I can't get enough oxygen to my brain all of a sudden)
-my feet swell up and turn purple when I'm on them for more than a few minutes (probably unrelated, and this is even worse when I'm menstruating, so that I can barely walk at all without help)
-when I'm sitting for too long, my hip bones, tail bone, and thigh bones start to ache (as opposed to my muscles aching, it is more like I'm actually feeling the bones ache)

Possible "nerve damage" causes?:

-I was X-rayed and diagnosed with scoliosis, an extreme curvature of the spine, when I was 12. I was told that I may need to wear a metal brace for the rest of my life. After seeing a chiropractor and being in traction every day after school for 1 year, new X-rays showed the curvature to be minimal. However, the pain in my neck remained.

-In 8th grade I was hit in the upper back, right between 2 vertebrae, by a baseball traveling at a very high speed. It knocked the wind out of me for several minutes, and I was in severe stabbing pain, but so embarrassed that I refused to call attention to myself. I sent myself home early afterwards and my mother put ice on it. Probably not it, but I note this because while the rest of the pain migrates, this is a spot that has never NOT been in pain.

-After a work injury 5 years ago (cervical strain), I had X-rays that showed nothing except for that miniscule curve in my spine, and the fact that my neck curves backwards into my skull (which is to say, it curves forward). The Dr. did not seem to think this was a big deal, though. But it certainly looks really weird.

And these were diagnosed as endometriosis:

-extremely painful menstrual cramps
-severe flu symptoms the week before and during my period
-the already noted swelling of my feet, so badly that I need help walking for the first day of my period
-periods are sometimes several weeks late
-migraines that last from a couple days before through the duration of my period
-sneezing a lot during my period, but not at any other time (it is all as if I'm allergic to menstruation!)
-short but heavy periods (2 or 3 days, thank goodness)
-infertility, inability to get pregnant
-I have a pretty low body weight considering the amount that I eat (I eat healthy, but I eat a lot - I am incessantly hungry, and if I don't eat for just a couple hours, I start to get faint and break into a cold sweat, so I always keep snacks in my purse now)

Okay, now my problem, aside from the fact that I may be misdiagnosed and I haven't had any neurological tests except to check for carpal tunnel:

I take Flexeril for the muscle spasms and the shakiness (the only medication I take, aside from multi-vitamins), but even without it my muscles are extremely weak and unpredictable. I sometimes find myself in situations in which I am expected to operate heavy machinery or to do precision work with chemicals that I am expected not to spill. For instance I am taking a REQUIRED course right now in which I need to use power tools including table saws, and work with various chemicals (I'm a theatre/film major, and it's a production workshop that everyone is required to take to receive a degree). This is a danger not only to me but to the people around me, and I'm a little terrified, needless to say. It's not like I'm just knocking over someone's glass of water like I usually do. My problem is that, not having any diagnosis that is recognized by the state of California as a disability, or even as a disease, I have no excuse not to do the same things that the healthy young people around me are doing, despite the fact that it is clearly dangerous for me to do them.

Does anyone have any advice?? And can anyone point me in the right direction?? The CMP and "nerve damage" are vague, but before that all my many doctors could come up with were depression (and I can not tell you how depressing THAT is!) or hypothyroidism (but my thyroid levels have been normal for 10 years)... Oh, and I don't have osteoperosis. And although I know I have all the symptoms of Lyme disease, I live in California (I used to spend summers in New Jersey swampland as a kid and can remember getting ticks on my clothing, but I can't remember ever being bitten by any, and it seems like I'd remember that!)

Oh, and the only thing I've found that seems to help with the pain at all is acupuncture, oddly enough. I just can't afford to do it more than once every few months, and it only helps for a few days, then starts to wear off and all the pain is back again. Anyone have any suggestions as to what I should do, about the class and about whatever the heck is wrong with me? THANK YOU!
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Unread 08-24-2007, 07:27 AM   #2
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Default Well, etcetera--

--you certainly have a lot going on.

But I am amazed you claim to have had no neurological tests except for those for carpal tunnel. Have you ever been to a neuromuscular specialist/neurologist? It sounds like there is a DEFINITE problem with your cervical spine impacting your spinal cord and nerve roots--the curvature and that baseball trauma may have both contributed--and you need to get a high-Tesla resolution MRI of your brain and cervical spine at the very least (and probably of your thoracic and lumbar spine, too). You may even be a surgcial candidate.

There may be other things going on as well--you probably fall into that "complicated case" category--but much of what you are relating can be due to abnormal pressures in the brain stem/cervical spine and that needs to be addressed.

You should also copy your post over to the Spinal Disorders forum:


--as there are a lot of people there far more knowledgable than I about the vagaries of spinal compressions and the attendant nerve dysfunction.
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Unread 08-24-2007, 11:02 AM   #3
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Default doctor

Glenntaj are You a doctor?

Last edited by henryb; 08-24-2007 at 01:49 PM.
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Unread 08-24-2007, 11:58 AM   #4
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It sounds like the drs that you saw did not follow up very well.
So you never had an MRI of the T & C spine?

17 yrs of this?? How long ago was the CMP dx'd?

Anyway quite a few of your sx could be a version of thoracic outlet syndrome. {TOS}
{ due to the upper body spasms and hand /arm/shoulder sx}

and the memory/cognitive stuff - ditto

might be easier if I quote what might not fit as a TOS sx-

-extreme muscle weakness in my arms and legs
-shaking/twitching while my body is at rest. My hands shake pretty badly, and I spill things WAY too often. {is that full body twitching?? or just hands and arms?}
-narcolepsy...? (uncontrollable sleepiness, nodding off despite trying desperately to fight it off, blacking out at inappropriate times. It is like I can't get a deep enough breath of air, and I can't get enough oxygen to my brain all of a sudden)
-my feet swell up and turn purple when I'm on them for more than a few minutes (probably unrelated, and this is even worse when I'm menstruating, so that I can barely walk at all without help)

I'll post the link to our TOS forum useful stickys and you can read more to see if it fits for you or not.
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Unread 08-24-2007, 02:27 PM   #5
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Default No, Henry--

--I'm not a physician, just a fierce researcher and consummate autodidact. (That can actually be said for most of the "experts" on various subjects here at Neurotalk--we have a vested interest in keeping up with the latest research in fields that might impact our conditions. And we become far more expert in those conditions than most doctors are--meaning we then scare the living **** out of them.)

(I have found personally I can only deal with physicians that do not mind well-informed patients--in other words, don't have that big doctor ego getting in the way of commmunication--and who work in teaching hospitals or research institutions, and therefore might have actually read some of the same papers that I and others here have.)

Last edited by glenntaj; 08-25-2007 at 06:07 AM.
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Unread 08-24-2007, 05:30 PM   #6
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I don't usually check this forum, but happened on this thread. I can't resist saying that Glenn is caring, well read, and brilliant enough to understand what he's read. I'd listen to him.

I will be adding much more to my B12 website, but it can help you with the basics already. Check it out.
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Unread 08-24-2007, 06:14 PM   #7
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I'd say Glenn is definitely right about the cervical and lumbar spine. I am a spinal disorders person myself. And you truly need to find a good spine doc. And by that I mean a spinal pain management doctor; he/she can help considerably with a diagnosis and then refer you to an NS or OSS if needed. Neurologists are good when it comes to the nerves but when you are speaking of spinal issues, in my mind, nothing is better than having a good spinal pain management doctor. I would be totally lost without mine...he is great at really investigating everything. So, between him and my Neurologist, I feel I am getting excellent care. And I should add that I go to a "spine group" not just a pain management clinic.

As for the endo., I have had it too. But it can be fairly easily dealt with it in all kinds of ways. There is so much more they can do now to treat it. And I know too the sweats and shakiness that can come from it and how sick you can really feel from it. For that I would definitely see a Reproductive Endocrinologist simply because you mentioned infertility as well. Been there and done that too...but many, many years ago. The endo was cleared up and I did conceive.

It is a shame you don't have insurance at the moment. But does the university you attend offer it? If so, I would check it out. It might be fairly expensive but it is better than nothing. I wish you luck with all of this because I know what it feels like to be one of those "complicated" cases.
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Unread 09-02-2007, 10:09 PM   #8
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Default thank you, everyone!

Thank goodness for the internet! I think I've become really jaded about doctors because I was treated like a hypochondriac for so long. I live in a small town in northern California with a HUGE meth epidemic, so when doctors aren't treating me as if my symptoms are all in my head, they're treating me as if I'm faking them to get painkillers (which I have no interest in - I just want to find out what the bleep is wrong with me so that I can actually be treated). Thank you all for your help, and I will post in some of the other forums as suggested. Have a good Labor Day! (I will be at my desk all day and night working on homework - college professors are sadists!).
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