Krickett

Two Dr.s Agree On N Dx But Now One Disagrees And Is Ruining My Tx Plan! Help

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So i am in the army and was diagnosed with narcolepsy with mild cataplexy in may.. i was forced to get a second opinion which agreed with the first... now the army has switched me to fort gordon in augusta ga... my medicationregiment was working beautifully for me and now they have screwed it all up... the sleep"specialist" (army doc) they sent me to was MORE concerned with my mentalhealth files which really arent his business... he preached for an hour on how terrible xyrem is and how if you have to take two doses its not working right and you shouldnt be on it ( funny how its dosed that wayand comes withits own alarm clock for just that reason) and that its a medication not intended for long term use... not only is he hell bent against the xyrem but hes also hell bent on saying I do NOT have narcolepsy and now has me wearing a watch thing to monitor my movements and writing a sleepdiary and all this useless stressfull crap...I want to ask to be sent to an off post sleep specialist as he clearly has alterior motives and knows NOTHING about narcolepsy outside of what hes seen in the movies which doesnt surprise me as the majority of what he is trained to treat by the army is sleep apnea and the like. he is trying to say that my narcolepsy is PTSD...can anyone help? Does anyone know of a good sleep specialist in augusta that i can ask to be transfered to that will continue the treatment that was working instead of stressing me the hell out with a ton more stupid testing that ive already been through?

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Augh, that bites. I mean I can personally attest that Xyrem does do damage to ones overall calm. But if it works, why change it? My guess is money. Xyrem is expensive and maybe he's under pressure to keep costs down. Which I understand, but not at the expense of the patient's health. Sorry about you ordeal! :/

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Doing a quick search on the Tricare website I only found one sleep specialist in the Augusta area, but that would be the first place to start. However, if they have their own sleep doc on post it may be difficult getting a referral out in town, and there is no guarantee that he will be any better. I know my experience with Navy medicine is going to be somewhat different from Army medicine, but I have found that in cases like this I have just had to make sure that I did not back down from the doctors just because they are officers. 

 

They are supposed to be providing you with medical care, and ensuring that you are at the best possible medical readiness, not adding to your distress. 

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Have you tried talking to your SDS Pharmacy nurse about what your doctor is saying, I'm sure Jazz has re-education programs for the doctors who forget the education they got to become part of the Xyrem success program.

 

I had trouble with conflicting doctor opinions, diagnosis and such.  The doctor that first made my diagnosis for Cataplexy wasn't comfortable with Xyrem spouted all kinds of misinformation.  And, then said he wasn't interested in taking the training needed to join Xyrem success to be able to prescribe it.  In the end he also wouldn't say that I had Narcolepsy.  Even though with the Cataplexy diagnosis I now have all 5 major symptoms of Narcolepsy.  My Sleep Doctor didn't disagree with the Cataplexy diagnosis either....and that it wasn't seizures or something after the second sleep deprived EEG.  The Sleep Doctor before him has also tried the it might be seizures route, which is how I ended up with the other Sleep Doc.  First Sleep Doctor was Internal Medicine with sub-specializations (listed in order) of pulmonary, critical care and sleep medicine.  My second sleep doctor is a Neurologist.

 

The doctor that would finally say I had Narcolepsy is a Psychiatrist....he had gone through all my records and then we talked for like an hour....not this I only got 12 minutes for each patient thing, and you wanting to talk (and expecting me to listen) is messing up my schedule.  Ended the session with getting the DVD and handout and filling out some forms to get me started on Xyrem.  He has mentioned that he's working under a doctor in another city for his sleep medicine, though he's the only doctor in the city here that treats Narcolepsy patients (he actually lives in a town midway between the two cities...) plus he knows Narcolepsy pretty good....he's married to one.  And, the huge transformation when she started Xyrem, etc.

 

While I see him less often now and for shorter appointments, it still throws me that I can actually talk to him....and its okay that I'm talking to other people or learning about this and that..including things to try.  Like I had heard of people taking Provigil and Nuvigil together....Since my Nuvigil alone wasn't doing as good anymore....and supplementing it with Dex didn't go well.  I mentioned the Provigil and Nuvigil thing to him...and he agreed to try it.  And, its been working great.

 

Though my Neurologist/sleep doctor saw on my medication list that I'm on both provigil and nuvigil and said that's completely wrong....they're different generations of the same thing.  Though the neurological things that he's managing are fine, and the neurological things he doesn't know what to do about yet....have him stumped to where he's going to send me away for a second opinion.

 

I'm have pretty bad peripheral neuropathy in my right leg and some in other limbs.  But, after all the tests, he can't find a cause or it so doesn't know how to proceed with it, and I also have other long standing issues that have gotten really bad in the last 4 months.  He had sent me to ENT because as usually they think its an inner ear problem (and ENT who told me was studying sleep medicine, and I later found that he got his board certification in December 2012....though his practice merged with the one that my first sleep doctor is at...)  But, he had said that what I was describing sounded neurological rather than an inner ear problem.  Eventually back to my Neurologist who then sent me off to a balance specialist....which was supposed to apply a treatment that would make a noticeable improvement, etc. Well, it didn't.  Though in his own assessment he didn't think I had any of the things that I had been referred to him for.

 

Though after the testing, it occurred to me that there seemed to be a left sidedness to how I did...and wondered if my neuropathy might have a factor in things.  Since balance specialist had left me a message saying he didn't think I needed to come back...I didn't discuss that with him.  Though I mentioned it to my Neurologist...though I don't know if he was listening.  And, I don't think I got it right when I had mentioned it while I was being taken to exam room, since doc didn't say anything about the intake note this time....

 

Now I'm waiting to see if I'm going to get called for an appointment at UNMC, and then try to figure out how to get there.  Even though both Omaha and Manhattan are served by American Eagle... out of Chicago or DFW....the only flights involve overnights in Chicago or DFW.  Alternatively, I could go to Kansas City and get same day flights....though not really usable same day up and back....and I don't think I could find a friend to drive me.  Almost didn't find a ride to Topeka....for that Balance specialist....

 

Speaking of Navy doctors....the only relative that that has been understanding and supportive through all my struggles leading to my diagnosis and since....has been my aunt, a retired Navy doctor.

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I too had a doc who was a nightmare that my original doc wanted a second opinion from.  He was a complete waste of time and sent me on a wild goose chase -.-

I feel your annoyance although I live in the Northeast and am not sure where you could go.  Hopefully you can find some folks in your area who know the local specialists.

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well they are sending me to another specialist... she claims to have treated narcolepsu patients and says shes very familiar with it..so im crossing my fingers... but sadly i dont have much hope... i dont know what to do if they pull my diagnosis... i have all the major symptoms including mild cataplexy but i feel like my PTSD diagnosis is somewhat hindering it because it causes me to have insomnia in addition to my inability to sleep thru the night... so they claim that it cant be narcolepsy... nevermind the fact that the sleep issues and eds started well before i went to war... what a frustrating time for me... i just wish i could go back to fort campbell and my original sleep dr. 

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Insomnia and fragmented sleep is an attribute of Narcolepsy.

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I am also in Augusta and I went to the Sleep Center at Doctor's Hospital. I so far have no complaints about the competence of the doctor I see or the treatment I have been provided with so far. Not on Tricare and I know from experience that they can be hopeless when it comes to "professionals" they cover. But I guess it never hurts to ask if you can be referred there. Good luck!

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Just wondering what Dr. you are using. I use Chadiry in Augusta near Doctor's Hospital. He started me on the cpap because I have mild sleep apnea, but I also have narcolepsy. He really wants to see if that will work without giving me meds. It does help a little, but I am still always tired! I hope when I go back in March that he will give me the meds I need :) good luck with everything!

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Dr. Carmel is my doctor and he usually has a medical student/intern with him when he sees me so I get really in-depth explanations of whats going on or whats expected to happen because he is not only educating me on my specific illness/needs he is also training them. So it works in my favor ;)

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