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Feels Like Doctors Are Fighting Against Their Patients


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#1 nursemanda

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Posted 19 July 2013 - 09:35 PM

I don't know if I'm the only person feeling this way but every time I go to see a doctor I feel like they're judging me already. I feel like they think narcolepsy is a junk diagnosis, they act as if I'm just lazy, as if I'm trying to pull the wool over their eyes just to get my drugs. I NEED those drugs. I have a documented disorder that almost killed me once (totalled a car) because I didn't take my medication. They make up special contracts just to make sure that I break it so they can drop me as a patient, refuse to even look at my case to see if they'd even be willing to take me as a patient when they hear that I need ritalin to treat it. Am I alone? I can't imagine I'm the only person who goes through this so what do you guys do? I did read about taking someone "intimidating" with me ... but what rights as a patient do I have? I mean, being a nurse you'd think I would know this ... but it just makes me realize how little choice we have against someone who has so much power.



#2 doinmdirndest

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Posted 20 July 2013 - 05:34 AM

I've been on a soap box for 3 years telling of a future with pwn calling the shots when it comes to what medication they have prescribed and in what amount. yet only I want this.

I know because only I would challenge the medical community regarding it's laughable puny recommended maximums for stimulant rx, and only I would have it that these products were otc.

I know the Founding Fathers would concur. nobody here does. or I am a piss poor 'rep' for my position, if its valid.

this mignot-yes, I omit 'dr.' the man once condemned my regimen. he'd say i'm drug-seeking but in reality i'm looking out for the woman I love. when my meds run out and I lapse into a coma she becomes highly despondent.

I wonder, had I not been able to replace the doctor that began my 300mg/d Adderall after the catastrophic effects of mignot's position led him to drop me, would a successful 10th suicide attempt on my wife's part precipitated by the situation-likely followed by my own (I love her as much as any man has ever loved any woman)....would that steal this dr. emanuell mignot's thunder?

he continues to ignore us. we treid snail mail w/self addressed stamped envelopes to 3 addresses he has. 2 weeks have passed. nothing.

evidently i'm supposed to silently acquiesce to whatever the great man says about my needed, necessary regimen.

by the way has anybody read A PRACTICAL GUIDE TO THE TREATMENT OF NARCOLEPSY AND OTHER HYPERSOMNIAS by dr mignot? (2012) his diatribe against the amphetamines begins with the most laughable absurdity.

'risk of diversion to intraveneous'

I know from extensive attemts-long ago when intravenous was still possible for me-that ingeneous matrix components have been devised for each of the amphetamines by manufacturers leave iv use impossible w/o a chemist's resouces and training.

Adderall becomes like thick syrup; desoxyn takes on the consistency of marshmallow when exoposed to water.

dr mignot is the director of the most prestigious institution treating our disease. and he is also a buffoon; or he was in this assertion. also in the assertion to me in '10 made to me w/o even seeing my chart.
write me off as an addict I don't care anymore and i'm about done anyways. i'm not the one to point out that the em[peror is naked.

I see it it so, don't have the makings of greatness or whatever it takes to change the course of medical history. I excel at busting my ass royally as a construction laborer though.

had the chance to tell the whole story to the 'big boss' of our firm. controlling 30 million a year, the guy exudes intelligence/credibility. favors Zimmerman's lawyer in how he appears.

told me Stanford and mignot would not have dealt w/him like they dealt w/me, were he in the same circumstances.

wonder if that developer that gave Stanford 151 million dollars is anything like my boss? perhaps i'll redirect my efforts into finding him and mailing a letter.....i'm about done here, though. it's been real, folks.

#3 DeathRabbit

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Posted 22 July 2013 - 10:17 AM

I personally have a very high opinion of Dr. Mignot, as he is doing critical research that could actually lead to a cure for N. But regardless of that, yes some doctors don't know anything about N. But many also recognize it as an actual problem. Three of the docs that I am goign to right now are believers. It's just a matter of finding one that is well informed.



#4 doinmdirndest

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Posted 23 July 2013 - 03:07 PM

he did something unacceptable in my case. we were told my treatment, one of years longstanding that makes me employable, was bad medicine. we asked why, cited an article by dr mignot specifying stimulant doses actually exceeding my own and the 450 mg/d sought by me as had my doctor odrer the eval., as o. k., and were told nothing except not to contact his office again.

we were shocked. we remain shocked. were we supposed to silently agree in humble acquiescense? volountarily stop my med?

had so much as an explanation of sws been offered it'd be different. but dead silence is what we got, I learned about sws on my own.

had it been you maybe you would give the man mixed reviews as well. his research work is outstanding, I see that. he should probably let a new director take over Stanford sleep, though.

#5 doinmdirndest

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Posted 25 July 2013 - 06:59 AM

just in case I had anybody concerned, we are ok.  don't trip. 

 

nursemanda- I hope you find a way to be wakeful.  I will remember you in my prayers.



#6 drago

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Posted 28 July 2013 - 11:19 PM

I don't know if I'm the only person feeling this way but every time I go to see a doctor I feel like they're judging me already. I feel like they think narcolepsy is a junk diagnosis, they act as if I'm just lazy, as if I'm trying to pull the wool over their eyes just to get my drugs. I NEED those drugs. I have a documented disorder that almost killed me once (totalled a car) because I didn't take my medication. They make up special contracts just to make sure that I break it so they can drop me as a patient, refuse to even look at my case to see if they'd even be willing to take me as a patient when they hear that I need ritalin to treat it. Am I alone? I can't imagine I'm the only person who goes through this so what do you guys do? I did read about taking someone "intimidating" with me ... but what rights as a patient do I have? I mean, being a nurse you'd think I would know this ... but it just makes me realize how little choice we have against someone who has so much power.

 

This might be an unpopular response, but it's true: Being a btich really helps.

 

I'm serious.

 

Keep in mind that most people can't imagine what it's like to have narcolepsy. I mean this literally -- they don't have the ability to understand the experience of having EDS long-term. To have a sleep attack, or sleep paralysis. The best they can do is think what it's like to be sleep deprived, but that is miles behind having narcolespy.

 

I am five foot one, and I look really young for my age. (In a bad way -- my dentist thought I was a teenager, and I'm in my late twenties!) So when it comes to being 'intimidating' all I have is my attitude. I have to act big and bold to be taken seriously. In basic social terms, this makes me a *BEEP*.

 

Now, I don't mean being belligerant. That doesn't help. But don't be cute. Don't hold back. For example...

 

Once a doctor asked me, "Do you really need this prescription?" (For adderall.)

 

I replied, "I have narcolepsy, and I need my prescription refilled."

 

The doctor, a man who theotetically has studied medicine and therefore knows what a sleeping disorder is, asked me again, "But, really, do you NEED it?"

 

So I said, "Without this medication, I am subject to having spontaneous bouts of unconsciousness. Doctors call these 'sleep attacks,' but what they are actually periods of time where I quite suddenly lose contiousness. Do you agree that spontaneous bouts of unconsciouness are dangerous, given that they can occur at any time?"

 

"Well, yes - "

 

"Then why would you ask if I 'NEED' the prescription I take to avoid that symptom? Certainly if you agree the symptom is dangerous, you would agree the treatment for that symptom is necessary."

 

He nodded and stopped asking me this stupid question.

 

If you're wondeirng if those were the exact words I used, the answer is yes. I rehearsed them before I went to the doctor, because it wasn't the first time he voiced his 'concern' over my medication. He was a general physician and agreed to treat me so long as I had my neurologist send over all her files. I have since changed doctors, but while I was his patient, he constantly asked me stupid questions. So I came up with answers that made him see how stupid his questions were.

 

Without yelling YOU ARE AN IDIOT! Which is what I wanted to do.

 

Sometimes clinical terms (like cataplexy or sleep attack or sleep paralysis) are used to the point of where their meaning is lost. I mean, 'sleep attack' as an expression, sounds ridiculous. Right? But when you say, 'spontaneous bout of unconsciousness' instead, or you say 'transitory episode of atonia or paralysis' instead of 'cataplexy', people HEAR that. The STUPID that sometimes hangs over doctors (like asking a person DX w/narcolepsy if they need their prescription) can be disappaited -- sometimes -- when you go for broke and point out the obvious crap they miss.

 

Like taking a stimulant to STAY AWAKE is important, especially for a person with a job. Or who is walking around, or cooking. Or who DRIVES A CAR! Again, I wanted to yell this, but  I refrained.

 

I am often frustrated with doctors, and not just in relation to my narcolepsy. When I wanted to talk about nutrition, my general doc wanted to boil it down to my 'weight' -- but my concern was for my health. I do a lot of karate now, and I needed some help navigating the waters in terms of having enough of the right fuel for my body to burn. My gen doc just kept telling me to 'cut down the carbs' -- which, incidently, is BAD advice for a woman who does 12 hours of karate a week. So, it's not just about the one disorder or the medication for it.

 

I hope you have better luck in the future,

drago



#7 nursemanda

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Posted 29 July 2013 - 04:41 AM

I haven't been able to leave my house in days. I stay awake for 45 minutes before starting to feel sleepy. Cataplexy happens somewhat randomly. If it weren't for my mother and sister, I can tell you id probably take the cowards way out of this life. Cross your fingers, I may find meds today.

#8 ironhands

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Posted 19 August 2013 - 03:16 PM

My last physical, my GP asked how I was feeling as she walked in the door.

 

"Tired" I said.

 

"Well, I can see why, your B-12 is a little low based on the blood test from a few weeks ago"

 

Right.  Certainly that explains it all. 



#9 DeathRabbit

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Posted 19 August 2013 - 04:47 PM

LOL, I've had that one too. Unfrotunately, b12 pills just mostly end up getting pissed out. Siblingual liquid is really your best but unfortunately, it does almost the exact same stimulants do to me. I get temporarily really hyper, then crash and my brain becomes goo.



#10 ironhands

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Posted 20 August 2013 - 11:05 AM

I just got back from my specialist. 

 

"Well, for your snoring you can lose weight, spend $2500 on a device, or have surgery."

 

Yeah... I don't care about the snoring, how about the REM latency <6 minutes?  Isn't that indicative of narcolepsy based on my other symptoms, with an underlying orexin deficiency????

 

"Oh, I don't know about that, I'm a lung specialist.  I don't deal with chemicals.  Did you want to see someone else?"

 

Seriously, just give me 50-100mg of modafinil to wake me up in the morning, and I'll self medicate something to put me to sleep, or just down a tonne of sugar before bed.  It always puts me out like a light.



#11 Ferret

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Posted 20 August 2013 - 11:32 AM

And I have this vivid picture in my mind, of two iron hands wrapped around the Doctor's throat and squeezing gently.
What a waste of your time and energy! How long before you get to see a REAL sleep specialist now? One who knows that a weight loss will stop the snoring and a weight loss will occur with Modafinil. DUH!
Or you could plan a vacation to Mexico, where Modafinil is called Modiodal...walk into a pharmacy and buy it...no prescription required.

#12 ironhands

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Posted 20 August 2013 - 11:51 AM

I was pretty pissed, but I didn't throttle him; he was 90 and quite fragile.  Very nice doctor, but not who they should have referred me to.  If it were OSA like the bulk of patients they get it would have been fine.  He referred me to another doctor, thankfully, the appointment is only a few days away.  I looked the doctor up and he specializes in psychiatry and neurology, and has some impressive history, so I look forward to meeting him and hoping he'll listen to what I'm saying instead of trying to sell me products and services.

 

Mexico would be nice, but I don't do vacations, I'd just be boerd and fall asleep.  Too expensive, and too far - I'm in Canada, so it's either Alertec or the generic alternative.  From what I understand, modafinil works along the orexin line, and isn't as open for abuse as an amphetamine would be.  I don't really want a CNS, and my symptoms are relatively minor with all of the lifestyle changes I've made.  I eat better, no sweets, I bike 5 miles a day, no gluten, and vitamins, and quit boozing.  At least with alcohol I had more energy :(



#13 Ferret

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Posted 20 August 2013 - 12:10 PM

You're doing all the right things for your health. Alcohol contains empty calories anyway and also makes me sleepy. May I suggest that you try the Alertec before you try the generic. Personally, I'm wary of generics.
Provigil=Alertec=Modiodal...all the same original by Cephalon but named differently in different countries.
I'm taking 100 mg of Modiodal at 8 a.m. and have been for just over two months. It has made a huge difference in my life but it took nearly two months to get the full effect. I have had no side effects except for a weight loss of about 7 pounds a month.
Best of luck to you!

#14 ironhands

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Posted 20 August 2013 - 12:38 PM

Yeah, I've done about as much as I can on my own, short of starving myself to get the weight down, but that won't happen on it's own.  I really think Alertec will fix me up - but it won't help resolve the REM onset, will it?  Is there anything to push the SWS and decrease the REM?



#15 Ferret

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Posted 20 August 2013 - 01:25 PM

I believe that would be Xyrem.

#16 ironhands

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Posted 20 August 2013 - 01:42 PM

My wallet can't take the hit for Xyrem, and I don't think my symptoms are severe enough to necessitate it.  Was thinking about medicinal MJ for that, I see a lot of people having positive results, and much cheaper, less side effects, etc.



#17 Ferret

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Posted 20 August 2013 - 01:49 PM

Please post back as to how that works out for you. If I remember correctly (from the past), the Canadian government sucks at producing quality MJ...remember the mines in Flin Flon?



#18 ironhands

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Posted 20 August 2013 - 01:59 PM

Certainly will.  I'm hoping to finally get a proper diagnosis.  Yeah, I heard when they first started the quality was quite bad.  From what I understand I can grow my own, or authorise someone to grow for me.  Not sure how it works if you want a different strain, or if they'll even care/know.  I just want to feel better in the morning and try to live as normal a life as possible.  Worried that I'll just get another "your symptoms are too mild/normal" or "it's just depression" answer.  Ah well, I'll find out Friday.



#19 ironhands

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Posted 20 August 2013 - 05:18 PM

I didn't realize this until just now.  The doctor I met with today didn't even mention the SOREMs.  If I hadn't cheated and gotten my hands on the results, I'd never have even known!!



#20 IdiopathicHypersomniac

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Posted 20 August 2013 - 06:04 PM

Alertec is junk.  I had so many problems with it until I got the generic by accident.  The generic is much better!  Antidepressants can reduce REM and Gabapentin can increase Stage 3.