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update

I went to see a neurologist last week per my PCP's order.  He told me that chiari isn't causing any of my problems (severe neck/back headache, ringing in ears, chronic fatigue, blackouts, dizzy spells, etc...) and each of my symptoms is because of a different problem.  The biggest thing he hit me with is that he believes that I have narcolpsy (sp?) and wants me to take an extensive sleep study.  He says that my headaches are because I am not getting enough rest and not because of chiari.  He set the sleep study for a couple weeks out.  I know that I don't have narcolpsy but he wants to put me on a muscle relaxer at night and provigil in the morning to wake me back up.  Any thoughts anyone???  Should I still send my MRI/MRA and reports to the Chiari Institute?
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Avatar universal
Hi there. I would certainly follow up with the sleep study, a lot can be revealed. It could be that your symptoms can be related to not getting the "right" kind of sleep. I have CM but was also diagnosed with sleep apnea. And this causes a host of problems in the body. Even if nothing shows up during the study, then the narcolepsy can be ruled out and doctors can focus on other things. When it comes to illnesses, conditions, etc., our bodies are like layers of stuff. One layer has to be peeled back one at a time, then go onto the next layer. Hope you find some answers.

Peace,
David
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Avatar universal
When will these 'quacks' ever wake up and smell the Chiari? What gives? Why is it so hard to understand that when the brain is smashed somthing must give? I mean we all understand that if you smash a bug it no longer flys, crawls, runs or bites! If you burn a bag of trash it no longer stinks. If you hit your thumb with a hammer it doesn't make your big toe hurt. If you amputate your left leg it does not mean you now need a prosthetic arm for your right leg. GRRRRRRRRRRRRRRR

It seems 'even' the the Drs who 'do' understand need to have the facts crammed down their eye sockets as they don't seem to really understand what their peers put us through. As Selma said, you know your body... do you have narcolpsy? If you have a doubt in your mind..... then I'd say go for it, answer your doubts. If not, tell the doc to take a chill pill and read a book on Chiari or find a new Dr. Sorry, don't mean to be discouraging, but when Chiari is eating you up inside the last thing you need is for the medical community to eat up what little energy you have wasting your time with unnessasary tests.

The Wolf
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620923 tn?1452915648
COMMUNITY LEADER
Hi...I am not a dr, but u already said u do not have narcolpsy...u know ur own body....get a second opinion.It is unfortunate that there r many NL and NS that do not believe symptoms come from chiari.......

I went to a sleep clinic and the dr there never completed a study with me, just fed me meds to get me to sleep...which didn't work.....he also wanted me to go to a behaviorist....I did not.....I must say, I am sleeping ever since my PFD surgery. : )

"selma"
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