Jump to content


Photo

Argh!!!!


  • Please log in to reply
3 replies to this topic

#1 Razzyirt

Razzyirt

    Member

  • Members
  • 2 posts

Posted 06 November 2012 - 04:33 PM

So, I spoke with the one sleep doctor today (a private practice one that specializes in sleep apnea). He is the one that referred me to the hospital sleep clinic, as he suspected narcolepsy. I phoned him to get another few weeks of the modafinil, as my appointment for my sleep study and MSLT results is November 30. He gave me the modafinil as a trial, to see if it did anything. Well, the modafinil has made a HUGE difference. Things are far from perfect....but I'm functioning and keeping my job.

As I said in my earlier, first, post. I had the sleep study from hell....and did everything BUT sleep. So, I talked with the doctor today about getting the refill...and low and behold, he got a preliminary note from the sleep clinic stating that they were not comfortable diagnosing narcolepsy at this time. The results were inconclusive. So...now the doc is like...well I can give you a few more weeks of modafinil...but to be honest...I don't know what we're actually treating you for....

ARGH!!!! I am sick and tired of everything taking sooooo bloody long. And I am sick and tired of doctors making me feel like I'm a hypochondriac, or just making all this up just for the hell of it!!!!!!!!!!!

I have been threw this already, a number of times....which is how I found out that I have this rare autoimmune disease that attacks the nerves in your digestive tract (mainly the esophagus) and I lost all ability to swallow (go figure...docs told me that I must be "exaggerating" my symptoms....)

And that is my rant....any advice?

#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,340 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 07 November 2012 - 02:24 AM

So, I spoke with the one sleep doctor today (a private practice one that specializes in sleep apnea). He is the one that referred me to the hospital sleep clinic, as he suspected narcolepsy. I phoned him to get another few weeks of the modafinil, as my appointment for my sleep study and MSLT results is November 30. He gave me the modafinil as a trial, to see if it did anything. Well, the modafinil has made a HUGE difference. Things are far from perfect....but I'm functioning and keeping my job.

As I said in my earlier, first, post. I had the sleep study from hell....and did everything BUT sleep. So, I talked with the doctor today about getting the refill...and low and behold, he got a preliminary note from the sleep clinic stating that they were not comfortable diagnosing narcolepsy at this time. The results were inconclusive. So...now the doc is like...well I can give you a few more weeks of modafinil...but to be honest...I don't know what we're actually treating you for....

ARGH!!!! I am sick and tired of everything taking sooooo bloody long. And I am sick and tired of doctors making me feel like I'm a hypochondriac, or just making all this up just for the hell of it!!!!!!!!!!!

I have been threw this already, a number of times....which is how I found out that I have this rare autoimmune disease that attacks the nerves in your digestive tract (mainly the esophagus) and I lost all ability to swallow (go figure...docs told me that I must be "exaggerating" my symptoms....)

And that is my rant....any advice?


I would insist on another shot, or even an outpatient sleep study (they can do them if they have the equipment). It's hard to sleep when you're in a weird place and stressing out and they should understand that or you really need to find a more compassionate and competent doctor. My first sleep doctor knew absolutely jack and *BEEP* about N. He actually told me Xyrem wasn't an option because it would, and I quote, "make me sleepy"

#3 doinmdarndest

doinmdarndest

    Member

  • Banned
  • 156 posts
  • Gender:Male
  • Location:n california
  • Interests:construction kayaking bowling cool old stuff my wonderful little blonde gal

Posted 07 November 2012 - 05:56 AM

at the risk of self-embarrasment i invite you to check out my posting history on tis and other forums. i find it a foregone conclusion that most all pwn reading them found me both mentally ill and episodic. i was not. i was duly incensed, and was taking appropriate steps as a man should under the circumstances i then was in.

i cannot say i did well. only that i did all i could come up with, and that it was no half-hearted effort.

the fact is that after 8 years of responding (in a normotensive status, berift of negative side effects), albeit in a nevertheless under-medicated status w/ my rx @ an amt=50% of my rx needs, to gen. adderall in (comparitively) massive doses i was @ stanford sleep as part of an ongoing re-evaluation of my already dx'd n. (mslt=2.18 min. avg. latency, 7 min REM latency)as was ordered by my rx'er as he wisely determined the appropriate first step in titrating up from 300mg/d to 450. this was after i asked we go up to 450 mg/d gen. adderall from the 300mg/d i had been rx'ed for some time prior to the events that followed my request.

there in redwood city, at what i'd been told was "mecca for narcoleptics" i was interrupted in mid-sentence at the first mention of a high dose regime (i was making comparisons from n. forum testimonials of those treated w/such regimes and those denied same by medical community) by a staff md @ so highly esteemed stanford sleep! HERE'S THE KICKER: a reasonable, simple emailed request was sent by me with a simple request: re-assign supervisory md activity to a more open minded supervising md (i desired not to take the work away from attending md dr chad ruoff. his behavior was most appropriate in contrast to dr. robinson, who set the tone of her practice in a most un-dr. like manner) after the same supervising md, dr. anistella robinson, stonewalled my position to which in the intake visit (2nd visit i am telling of here) she had conceded under much duress that in extremely rare cases regimes such as mine were medically correct. i wanted her replaced for good reasons, the best of which is a fragile good hearted woman i love whose 9 suicide attemts leave me unable to allow bad news to happen.

cessation of my meds=somnolescence so severe she can't interact w/ me. she's highly dependant on me. un-/under-medicated n. symptops in me have her most despondent. at any/all times this is my status.

i wish to express gratitude to all tolerating the lengthiness (which i find inevitable it's a complex story) of my posting. i hope just 1 reply that can help, or at least help my morale comes in the form of a reply to this posting it would mean a lot to me. onward, now:

the fear of her 10th suicide attempt being precipitated by my wife's learning of the grim reality after that 2nd visit that standford md's would NOT be helpful to our hopes/goals for my n. treatment options had me deceive her, by omission of the details of the visit, for the first time ever.

prior to this event she and i had for 8 years not once deceived each other, ever. unless my rarely having cleared my throat to cover audible flatulence i could not repress amounts to deceiving my wife-this is as close as ever it got!

director/dr. mignot's assistant's reply to the reasonable request for a new supervising md i emailed to dr mignot had an impact upon our home and our lives so devastating the most apt adjective for same devastation may reasonably be 'thermonuclear'

to this day and for sure to the one i die i'll remember well 12 words.

"WE WOULD NOT ADVOCATE USING STIMULANTS IN THE AMOUNTS YOU ARE PRESCRIBED"

well here we are 2 yrs after the fact and susie and i yet carry on. we/the sacred love we share yet lives on. and i am yet under medicated. and evidently ever i am to be.

now i know the most esteemed institution on planet earth for n. treatment, stanford sleep, can and did handle a (this)man's medical needs about on par w/ a monkey attempting coitus interuptus w/a g.d. football!

to think that before all i knew about stanford was that they were @ cal. bears in the big game........sheesh.

hope it has been encouraging to know that figuratively speaking you are not the only one that gets passed over, is given platitudes/clean up words/pure b.s. by a man or woman who can, in an effort the duration of which=scant seconds, scribble rx notation on a little pad of paper and w/only this and nothing more could have us free of our n. symptoms, free at last from EDS/fatigue, our grim and cheerless foes.

wonder how they would liked to have had a go at medical school w/our n. symptoms/condition. this is certian: they'd not have become md's had they proceeded w/their training thusly debilitated/robbed of vim/vigor by n. symptoms. not one. what a fine petic justice it would be if somehow our n. symtoms manifested themselves today into their physical existence.

whole different tune they'd sing that day, i tell you. a while different tune indeed!

-may we be not cheerless, even if hopeless.

good luck to you and best wishes. happy holidays as well!

incidentally, i wish to recognize in this public forum the md who was treating me then. if ever any md was/is a man of his oath it would be Dr. Robert Ian Picker.

misunderstandings most understandable from/of all the hubbub/drama that transpired after things got under way for me @ stanford sleep led him to drop me from his practice. an internist now continues his regime, by the grace of god and because of the good-hearted dedication to medicine this man posesses.

i have regret that dr. picker can no longer find it possible to communicate w/me. we had an excellent rapport for 8 yrs. it was he who stepped up to the plate and rx'd the 300 mg/d absolutely indicated in me. in the event he reads this i wish to offer him thanks. also, my regrets for what i find is a lost association w/another human being, an association that had quality and worth.

apologies to all others for what must appear to be an irrelevant, tangenital post script. my postings probably take way too much time/effort to read to begin with.

may medical history lift her lamp to his intrepid correctness in how he practiced, never to go dim. that's how i see it when it comes to the memory of this man. and what he did for me.

#4 doinmdirndest

doinmdirndest

    Member

  • Members
  • 336 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 22 March 2014 - 06:25 PM

this reply is so my current profile page may be used to access posts of mine under the banned username as well