Ah, the mysteries of the disappearing faxes... two of my doctors say they faxed referrals and medical information to the new doctor on September 10, yet new doctor says they have not received any of it, so I can not make an appointment yet. No worries. I'm not in a hurry or anything. I'm not deteriorating or anything. My brain is totally fine. My hands shake because I guess I'm so goddamned excited all the time.
Still taking me Atenelol at night, but it hasn't stopped the hypnagogic hallucinations entirely. Woke Ben up the other night to tell him that the bugs were on him, the bugs that only I can see of course. He knows they're not there, but he has to watch me get up, turn the lights on, and examine the bed anyway. If this were the 60s, before EDS was named and its comorbidities identified (Chiari, POTS, MVP), I would have been sent away to be locked up in one of those horrible old-school asylums you see in movies. Might not be so bad... they probably have excellent pills :)
On a somewhat unrelated note...
I have a wonderfully colorful friend, a really talented guy with an enigmatic sense of humor and a relatively beautiful spirit, and he's sick too. I won't go into details since they're not mine to share, but being sick is a lot easier when you have someone to talk to... I know that misery loves company, but so does stubborn hope.
Thursday, September 13, 2012
Monday, September 10, 2012
One Step Forward, Two Steps Back
I started taking my Atenelol with my Zanaflex right before bedtime, and controlling my heart rate during sleep seems to help with the hypnagogic hallucinations. But there's one odd symptom that's driving me crazy...
The feeling of ice water, spreading down my back. This happens when I'm laying in bed, but it's not a hallucination. I'm awake when I feel it. I jump up out of bed to check my sheets and comforters. Once I even yelled at my husband because I assumed his ice pack was leaking onto my side of the bed. There was nothing there. There never is. So why am I feeling ice water down my back and on my left hip? I'm tired of getting the weird-ass rare symptoms of everything. I've never heard of anyone else having this problem. I miss normal sleep :(
The feeling of ice water, spreading down my back. This happens when I'm laying in bed, but it's not a hallucination. I'm awake when I feel it. I jump up out of bed to check my sheets and comforters. Once I even yelled at my husband because I assumed his ice pack was leaking onto my side of the bed. There was nothing there. There never is. So why am I feeling ice water down my back and on my left hip? I'm tired of getting the weird-ass rare symptoms of everything. I've never heard of anyone else having this problem. I miss normal sleep :(
Thursday, September 6, 2012
Out with the Old, In with the New
I've decided I'm going to try one last local neurologist before I consider the Rochester Mayo Clinic. He's highly recommended by a few people I know, and he may be able to make sense of my tremors/memory loss/migraines/aphasia even without a vast amount of knowledge about Ehlers-Danlos Syndrome. Calling to get records faxed to a new doctor (especially when the old doctor and new doctor are within the same specialty) is like pulling teeth. The staff acts offended that I no longer want to see their delicate genius who refuses to re-evaluate his Chiari Theory (see earlier post). Your doctor told me that he needed proof that patients with heritable connective tissue disorders benefit from upright imaging. Since I can't make him go back to medical school and relearn the anatomy and physiology of the brain, I'm going to see a new neurologist. It's that simple. I'd like to regain the full use of my hands, and prevent further memory loss. I'd like to be able to speak without confusing words. I'd like to be able to sit-up/stand without having my neck cocked to the side because I'm a human bobblehead. I'd like to hold my head up without immense pain and nausea. If you don't want to help me accomplish that, I'll find a new doctor to take my insurance money. Simple as that.
Wednesday, September 5, 2012
Baby Fever
I suppose I shocked a lot of my family when I did things in the appropriate order. I graduated high school. I met a guy, fell in love. Got married (even if I did do it in Vegas, mostly because the very thought of having to buy and wear a wedding dress made me nauseous). I made it to age 21 without ever having a baby out of wedlock! Considering I was a bit of a wild child with a family history of young motherdom, I guess I can understand everyone's surprise. We were married in 2008. We were both working full-time, and we were both still in school (he was pursuing his MBA). It just wasn't the right time for a family.
I didn't know how sick I was at the time. I guess I assumed that eventually my doctors would find a medication that would alleviate my migraines and muscle control problems. I wasn't too worried about it. Of course, I got worse, and in November of 2010 I had to quit my job that I loved because I had to dedicate business hours to doctor's appointments. My health has pretty much been on a rapid decline since. Now I realize that there may never be a "right time" to have a baby. My geneticist, Dr. Descartes, assured me that I can have a healthy pregnancy. I have no family history that suggests I have the Vascular form of EDS (for those patients, pregnancy is usually discouraged by medical professionals because it can be super dangerous), so I shouldn't have an increased risk of any fatal complications to me or the baby. I cried when Dr. Descartes told me that there's a 50% my child will inherit my genetic mutation and develop EDS. She explained to me that there are things that can go wrong and disorders that can materialize in babies born to perfectly healthy mothers, and that genetic mutations can sometimes happen sporadically with no family history or affected parent. She also joked, in a lighthearted manner, that there are plenty of people walking around with terrible personalities that shouldn't have kids, but they do. Children were still an option for me, even as an EDS patient.
In a way, I was relieved. My husband has a problem with his pituitary gland, so I have to give him weekly testosterone shots for his body to function normally. His endocrinologist has always told him that he'd refer us to a wonderful reproductive endocrinologist when we decided that it was time to have a baby. When my husband mentioned to him during an appointment that I might have Ehlers-Danlos Syndrome, he changed his tune. He said we absolutely could not have a baby until I was diagnosed. In fact, he discouraged unprotected sex until diagnosis just on the offchance that we might miraculously conceive without the help of the reproductive endocrinologist. I guess he was concerned about the possibility of Vascular EDS, for valid reasons.So I was happy when Dr. Descartes explained that my family history doesn't indicate that I have VEDS, that she believes I have the Hypermobility form with a good mix of Classic EDS symptoms. This means that the reproductive endocrinologist will still work with us, when we're ready.
Ideally, I'd love to wait until my health gets better to have a baby. Unfortunately I don't see that happening anytime soon. I'm not having much luck with doctors or treatment. My memory loss and aphasia are progressing. The tremors in my hands are worsening. This may be as good as it gets for me. And my husband's age worries me. He's 35, and I don't know what kind of fertility methods/treatments we'll have to try because of his testosterone problem or how long we'll have to wait for them to work. If I were healthy, I wouldn't have to worry about this. Even if the fertility treatments took years, I'd be fine. But in a few years, or two, or even one, I may be much worse off. I know there are people out there who probably think I shouldn't try to have children at all, either because I could pass my EDS on to them or because my health may deteriorate to a point where I can't give them the level of care that I should. I do struggle with the idea of having a biological baby knowing I have a genetic mutation. It's a personal choice that every person with EDS has to make for themselves. As for not being able to give any future children the care that they need, well... let's just say that I see plenty of fat, lazy, negligent mothers in Wal-Mart and they somehow manage to keep their hordes of children alive :) It wouldn't be easy, but it's more than possible. I'm lucky because I don't seem to have a problem with dislocation, so I don't think my mobility will ever be an issue. In my case, it's mostly a "fear of the unknown" situation. I've racked up a number of diagnoses, and my doctors still think there are other issues that we haven't figured out yet. Down the road, I may very well be diagnosed with MS. Anything could happen.
Anyway, it's not easy to be a 25 year old woman whose biological clock seems to be ticking at a faster pace because of a progressive chronic illness. To make matters worse, my younger sister had her first baby (my beautiful niece) at the beginning of August. Seeing the birth and spending time with her afterwards made my heart ache. And, of course, it spurned a new family discussion of "When are you and Ben going to have a baby?" New babies in my family happen every few months, and you'd think they'd be too distracted by the plethora of children birthed by my cousins to notice my empty womb, but no. They notice and they inquire. My family is aware that I have medical problems, and I've told them the diagnoses a few times, but they don't quit understand how serious and often debilitating those medical problems can be. In my family (Irish and mostly-Catholic), married women are generally on a regularly-scheduled program of baby-making. It's unusual to be married for four years without at least one kid. My uterus is obviously behind. I love them and I know they mean well, so I just change the subject. The constant barrage of pregnancies and new babies on Facebook is harder to ignore. I can't begrudge everyone else a new baby just because I have healthy/fertility issues but jeez... the people on my friend's list must have sex constantly. Never before has such a fertile group of people been assembled. I've joked that being my Facebook friend must be an aphrodisiac, because there's a new pregnancy announcement every week, a new notification that so-and-so is x amount of weeks along with their boy/girl. Honestly? It sucks. It makes me sad. It makes me a little bitter, mostly towards myself.
I want a baby. Badly.
I didn't know how sick I was at the time. I guess I assumed that eventually my doctors would find a medication that would alleviate my migraines and muscle control problems. I wasn't too worried about it. Of course, I got worse, and in November of 2010 I had to quit my job that I loved because I had to dedicate business hours to doctor's appointments. My health has pretty much been on a rapid decline since. Now I realize that there may never be a "right time" to have a baby. My geneticist, Dr. Descartes, assured me that I can have a healthy pregnancy. I have no family history that suggests I have the Vascular form of EDS (for those patients, pregnancy is usually discouraged by medical professionals because it can be super dangerous), so I shouldn't have an increased risk of any fatal complications to me or the baby. I cried when Dr. Descartes told me that there's a 50% my child will inherit my genetic mutation and develop EDS. She explained to me that there are things that can go wrong and disorders that can materialize in babies born to perfectly healthy mothers, and that genetic mutations can sometimes happen sporadically with no family history or affected parent. She also joked, in a lighthearted manner, that there are plenty of people walking around with terrible personalities that shouldn't have kids, but they do. Children were still an option for me, even as an EDS patient.
In a way, I was relieved. My husband has a problem with his pituitary gland, so I have to give him weekly testosterone shots for his body to function normally. His endocrinologist has always told him that he'd refer us to a wonderful reproductive endocrinologist when we decided that it was time to have a baby. When my husband mentioned to him during an appointment that I might have Ehlers-Danlos Syndrome, he changed his tune. He said we absolutely could not have a baby until I was diagnosed. In fact, he discouraged unprotected sex until diagnosis just on the offchance that we might miraculously conceive without the help of the reproductive endocrinologist. I guess he was concerned about the possibility of Vascular EDS, for valid reasons.So I was happy when Dr. Descartes explained that my family history doesn't indicate that I have VEDS, that she believes I have the Hypermobility form with a good mix of Classic EDS symptoms. This means that the reproductive endocrinologist will still work with us, when we're ready.
Ideally, I'd love to wait until my health gets better to have a baby. Unfortunately I don't see that happening anytime soon. I'm not having much luck with doctors or treatment. My memory loss and aphasia are progressing. The tremors in my hands are worsening. This may be as good as it gets for me. And my husband's age worries me. He's 35, and I don't know what kind of fertility methods/treatments we'll have to try because of his testosterone problem or how long we'll have to wait for them to work. If I were healthy, I wouldn't have to worry about this. Even if the fertility treatments took years, I'd be fine. But in a few years, or two, or even one, I may be much worse off. I know there are people out there who probably think I shouldn't try to have children at all, either because I could pass my EDS on to them or because my health may deteriorate to a point where I can't give them the level of care that I should. I do struggle with the idea of having a biological baby knowing I have a genetic mutation. It's a personal choice that every person with EDS has to make for themselves. As for not being able to give any future children the care that they need, well... let's just say that I see plenty of fat, lazy, negligent mothers in Wal-Mart and they somehow manage to keep their hordes of children alive :) It wouldn't be easy, but it's more than possible. I'm lucky because I don't seem to have a problem with dislocation, so I don't think my mobility will ever be an issue. In my case, it's mostly a "fear of the unknown" situation. I've racked up a number of diagnoses, and my doctors still think there are other issues that we haven't figured out yet. Down the road, I may very well be diagnosed with MS. Anything could happen.
Anyway, it's not easy to be a 25 year old woman whose biological clock seems to be ticking at a faster pace because of a progressive chronic illness. To make matters worse, my younger sister had her first baby (my beautiful niece) at the beginning of August. Seeing the birth and spending time with her afterwards made my heart ache. And, of course, it spurned a new family discussion of "When are you and Ben going to have a baby?" New babies in my family happen every few months, and you'd think they'd be too distracted by the plethora of children birthed by my cousins to notice my empty womb, but no. They notice and they inquire. My family is aware that I have medical problems, and I've told them the diagnoses a few times, but they don't quit understand how serious and often debilitating those medical problems can be. In my family (Irish and mostly-Catholic), married women are generally on a regularly-scheduled program of baby-making. It's unusual to be married for four years without at least one kid. My uterus is obviously behind. I love them and I know they mean well, so I just change the subject. The constant barrage of pregnancies and new babies on Facebook is harder to ignore. I can't begrudge everyone else a new baby just because I have healthy/fertility issues but jeez... the people on my friend's list must have sex constantly. Never before has such a fertile group of people been assembled. I've joked that being my Facebook friend must be an aphrodisiac, because there's a new pregnancy announcement every week, a new notification that so-and-so is x amount of weeks along with their boy/girl. Honestly? It sucks. It makes me sad. It makes me a little bitter, mostly towards myself.
I want a baby. Badly.
THAT Syndrome...
Lady called me back from the new Rheumatologist's office, informed me that he doesn't see patients with that syndrome.
Individual Case Management agent called me back from BCBS of AL, there's no way for them to help me (a) find a doctor that specializes in EDS in my state or (b) get around the restriction that requires a doctor to order/precert all imaging.
Just another Wednesday in the life of a chronically ill person :)
In other news, a very nice young girl that I met a few times was killed on her way to her classes for nursing school yesterday morning. As a sick person, I'm very honest with myself about my own mortality but I try not to think too much about the mortality of others. The truth is that our lives are in the hands of others at almost any given moment of every day. And while that can be a very depressing thought, it's almost kind of a relief. There's nothing you can do to stop death, and stressing about it gets you nowhere. Be a good person, help others, make the best choices that you can. That's all any of us can do.
Individual Case Management agent called me back from BCBS of AL, there's no way for them to help me (a) find a doctor that specializes in EDS in my state or (b) get around the restriction that requires a doctor to order/precert all imaging.
Just another Wednesday in the life of a chronically ill person :)
In other news, a very nice young girl that I met a few times was killed on her way to her classes for nursing school yesterday morning. As a sick person, I'm very honest with myself about my own mortality but I try not to think too much about the mortality of others. The truth is that our lives are in the hands of others at almost any given moment of every day. And while that can be a very depressing thought, it's almost kind of a relief. There's nothing you can do to stop death, and stressing about it gets you nowhere. Be a good person, help others, make the best choices that you can. That's all any of us can do.
Tuesday, September 4, 2012
Shut Up & Take My Insurance Money!
It's only Tuesday and I can already tell this is going to be a frustrating week.
I am waiting on the insurance lady from my current Rheumatologist's office to call me back with information that I need to fix an insurance claim problem involving some lab work the doctor ordered with incorrect diagnosis codes. My insurance company won't tell me what the diagnosis codes were, and the doctor's office staff claim they can't communicate with my insurance company directly about the problem, so it's kind of like solving a riddle. An expensive riddle.
I am also waiting on a call back from a new Rheumatologist. My sister-in-law's husband comes from a family of doctors, and one of them recommended this guy. Because I am tired of bouncing from specialist to specialist with no results, I made it a point to call and ask if he sees patients with Ehlers-Danlos Syndrome.
"What?" The receptionist asked.
"Ehlers-Danlos Syndrome," I repeated.
"I've never even heard of that. Spell it for me."
Something tells me he's not going to be of much help.
Lastly, I am expecting a call from a Case Management agent at my insurance company. For people with chronic illnesses, they can assign a nurse to your case who will help manage your care and get you the appropriate doctors, tests, etc. All I want more than anything in this world is an upright MRI. You'd think I was looking for a new liver. It's one simple test, one effing test that my insurance company will gladly pay for because I am costing them upwards of 1 million dollars just because I keep seeing doctors that have no knowledge of EDS. Gee, I know! I'll just call and ask the doctor if he knows anything about EDS before I make the appointment!
"I don't know, you'll have to get a referral and make an appointment so we can view your records before we'll know if can treat you," said the less-than-friendly receptionist at the neurologist's office that I called this morning.
It's frustration with situations like this that drove me to contact the Mayo Clinic in Jacksonville about making an appointment. I have a friend that recently returned from the Mayo Clinic and he raved about their thoroughness. I filled out the appointment request online and received a callback within 24 hours.
"We don't have any doctors here that are knowledgeable about your problem," said the friendly Mayo Clinic employee. "All those doctors are in Rochester, Minnesota, our largest branch."
"Well, I don't really need an EDS specialist, per se. I just need a neurologist that knows enough about connective tissue disorders to order an upright MRI so I can be properly evaluated for Chiari Malformation."
"We don't do that imaging here, you'd have to go to Rochester."
Fine, fine. I told him to forward my info to Rochester and they still haven't called me back.
In the meantime, I keep getting worse. Last night, I noticed I now have tremors in my toes. MY TOES! It's neat, because I'm not used to ever moving my toes individually, so it's a more foreign sensation than the tremors in my hands. Neat, and a little frightening. I love new symptoms! Also finding it harder and harder to stand or sit up without being overwhelmed by nausea, headaches and neck pain. It's not the POTS acting up, it's my effing neck. I know it, other Chiari patients know it, and the goddamn textbooks know it. Stabbing pain from Valsalva maneuvers! Check. Hypnagogic hallucination from brain stem impingement! Check. Central Sleep Apnea from brain stem impingement! Check. Headaches originating in the back of the head/neck! Double check. Constant nausea when upright! Yep. Neurological symptoms exacerbated in gravity-bearing positions! Cranial-cervical instability! Long term memory loss! Aphasia! Oh, and my pulsatile tinnitus is coming back, which --upon first glance-- might be confused with a symptom of Pseudotumor Cerebri, except my OP on my lumbar puncture is not high enough... you could be like my first neurologist and assume I have PTC anyway and immediately treat with humongous doses of Diamox, thus making me sicker and bedridden for months. OR (and I know this is ludicrous thinking) you could explore other options... like temporary CSF blockages caused by shifts in brain anatomy in gravity-bearing positions caused by CHIARI MALFORMATION! See what I did there? Full-circle logic.
My current neurologist originally thought I had Chiari, but when my supine MRI came back clear he decided to give me Butalbital and see if I develop a brain bleed. Or at least I assume that's our current plan. If you think I'm symptomatic for Chiari, but then you rule out Chiari, does that mean I'm normal? Jesus Harold Christ, doctor logic baffles me sometimes. Anyway, shortly after that I was sent to a geneticist who diagnosed the Ehlers-Danlos Syndrome. Thanks to the power of Google combined with hours of lying in bed with nothing to do but read medical studies on my iPhone, I discovered that patients with Heritable Connective Tissue Disorders (like yours truly) need upright MRIs because our brain anatomy can shift and move in "small but important" ways when we're in gravity-bearing positions... like sitting or standing up. I called my neurologist's office and left a message, explaining in a few clear, short sentences that my connective tissue in my brain moves around because of the EDS, and I need an upright MRI to truly be evaluated for Chiari. His nurse called me back and said that he needs "proof of that" because he'll have to jump through insurance hoops to get me that test, blah blah blah. I feel I should note that I suspected I had EDS before this doctor ordered the supine MRI, so I suggested to him at that time that we do an upright MRI because I have documented neck problems indicative of CCI. He literally scoffed.
Needless to say, I am searching for a new neurologist. For any of you out there that are experiencing similar problems with physicians unwilling to learn anything new, here's the "proof":
http://www.chiariconnectioninternational.com/docs/Hereditary_disorders_of_connective_tissue.pdf
http://prettyill.com/downloads/Dr._Diana_Theory_rev_03-2011.pdf
And information about the hypnagogic hallucinations and their relationship to conditions that cause brain stem inpingement/impairement...
http://brain.oxfordjournals.org/content/121/10/1819.full.pdf
I am waiting on the insurance lady from my current Rheumatologist's office to call me back with information that I need to fix an insurance claim problem involving some lab work the doctor ordered with incorrect diagnosis codes. My insurance company won't tell me what the diagnosis codes were, and the doctor's office staff claim they can't communicate with my insurance company directly about the problem, so it's kind of like solving a riddle. An expensive riddle.
I am also waiting on a call back from a new Rheumatologist. My sister-in-law's husband comes from a family of doctors, and one of them recommended this guy. Because I am tired of bouncing from specialist to specialist with no results, I made it a point to call and ask if he sees patients with Ehlers-Danlos Syndrome.
"What?" The receptionist asked.
"Ehlers-Danlos Syndrome," I repeated.
"I've never even heard of that. Spell it for me."
Something tells me he's not going to be of much help.
Lastly, I am expecting a call from a Case Management agent at my insurance company. For people with chronic illnesses, they can assign a nurse to your case who will help manage your care and get you the appropriate doctors, tests, etc. All I want more than anything in this world is an upright MRI. You'd think I was looking for a new liver. It's one simple test, one effing test that my insurance company will gladly pay for because I am costing them upwards of 1 million dollars just because I keep seeing doctors that have no knowledge of EDS. Gee, I know! I'll just call and ask the doctor if he knows anything about EDS before I make the appointment!
"I don't know, you'll have to get a referral and make an appointment so we can view your records before we'll know if can treat you," said the less-than-friendly receptionist at the neurologist's office that I called this morning.
It's frustration with situations like this that drove me to contact the Mayo Clinic in Jacksonville about making an appointment. I have a friend that recently returned from the Mayo Clinic and he raved about their thoroughness. I filled out the appointment request online and received a callback within 24 hours.
"We don't have any doctors here that are knowledgeable about your problem," said the friendly Mayo Clinic employee. "All those doctors are in Rochester, Minnesota, our largest branch."
"Well, I don't really need an EDS specialist, per se. I just need a neurologist that knows enough about connective tissue disorders to order an upright MRI so I can be properly evaluated for Chiari Malformation."
"We don't do that imaging here, you'd have to go to Rochester."
Fine, fine. I told him to forward my info to Rochester and they still haven't called me back.
In the meantime, I keep getting worse. Last night, I noticed I now have tremors in my toes. MY TOES! It's neat, because I'm not used to ever moving my toes individually, so it's a more foreign sensation than the tremors in my hands. Neat, and a little frightening. I love new symptoms! Also finding it harder and harder to stand or sit up without being overwhelmed by nausea, headaches and neck pain. It's not the POTS acting up, it's my effing neck. I know it, other Chiari patients know it, and the goddamn textbooks know it. Stabbing pain from Valsalva maneuvers! Check. Hypnagogic hallucination from brain stem impingement! Check. Central Sleep Apnea from brain stem impingement! Check. Headaches originating in the back of the head/neck! Double check. Constant nausea when upright! Yep. Neurological symptoms exacerbated in gravity-bearing positions! Cranial-cervical instability! Long term memory loss! Aphasia! Oh, and my pulsatile tinnitus is coming back, which --upon first glance-- might be confused with a symptom of Pseudotumor Cerebri, except my OP on my lumbar puncture is not high enough... you could be like my first neurologist and assume I have PTC anyway and immediately treat with humongous doses of Diamox, thus making me sicker and bedridden for months. OR (and I know this is ludicrous thinking) you could explore other options... like temporary CSF blockages caused by shifts in brain anatomy in gravity-bearing positions caused by CHIARI MALFORMATION! See what I did there? Full-circle logic.
My current neurologist originally thought I had Chiari, but when my supine MRI came back clear he decided to give me Butalbital and see if I develop a brain bleed. Or at least I assume that's our current plan. If you think I'm symptomatic for Chiari, but then you rule out Chiari, does that mean I'm normal? Jesus Harold Christ, doctor logic baffles me sometimes. Anyway, shortly after that I was sent to a geneticist who diagnosed the Ehlers-Danlos Syndrome. Thanks to the power of Google combined with hours of lying in bed with nothing to do but read medical studies on my iPhone, I discovered that patients with Heritable Connective Tissue Disorders (like yours truly) need upright MRIs because our brain anatomy can shift and move in "small but important" ways when we're in gravity-bearing positions... like sitting or standing up. I called my neurologist's office and left a message, explaining in a few clear, short sentences that my connective tissue in my brain moves around because of the EDS, and I need an upright MRI to truly be evaluated for Chiari. His nurse called me back and said that he needs "proof of that" because he'll have to jump through insurance hoops to get me that test, blah blah blah. I feel I should note that I suspected I had EDS before this doctor ordered the supine MRI, so I suggested to him at that time that we do an upright MRI because I have documented neck problems indicative of CCI. He literally scoffed.
Needless to say, I am searching for a new neurologist. For any of you out there that are experiencing similar problems with physicians unwilling to learn anything new, here's the "proof":
http://www.chiariconnectioninternational.com/docs/Hereditary_disorders_of_connective_tissue.pdf
http://prettyill.com/downloads/Dr._Diana_Theory_rev_03-2011.pdf
And information about the hypnagogic hallucinations and their relationship to conditions that cause brain stem inpingement/impairement...
http://brain.oxfordjournals.org/content/121/10/1819.full.pdf
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