7 replies to this topic

[AckDreams]

When meeting with a new doctor, how much information is too much information? I have an appointment with a good Neurologist who specializes in Narcolepsy in a few weeks. The appointment is very far away from home (I live on an island and there are no specialists here) and I'm anxious to make the most of my appointment. A friend of mine is a doctor and she says I have a tendency to give too much information to doctors and I end up overwhelming them. I don't want to come across as having psych. problems or like I'm drug or diagnosis hungry. How do I know what information to make sure I share and what info I'm better off keeping to myself?

For example:
Do I share that in college I took Ecstasy and LSD four times and I have a family history of alcoholism - or do I keep that to myself because I wouldn't want to be labeled as a drug seeking addict and have a doctor not want to prescribe me something that might help my narcolepsy symptoms? Do I mention to them how over the summer I was worried maybe I was too dependant on my medications and for a while I thought I was an addict but when I decided on my own to stop taking all my medications my Narcolepsy symptoms were suddenly profound - or would that make me look irresponsible?

Do I share that I've been diagnosed repeatedly as having bipolar and depression even though no amount of therapy or antidepressants ever made any positive difference in my life - or do I keep that to myself for fear that my narcolepsy symptoms may be diagnosed as psychological?

Do I share the full extend of my dozens of random ER visits for random injuries caused by fainting/cataplexy, misprescribed medications, and falling asleep mid-activity and how doctors and family members often accused me of not being truthful but looking back my current doctor and I think it was due to narcolepsy??

Do I share my frequent struggles with doctors who have prescribed medications that gave me bad side effects and how very often I researched it all on my own only to discover that I repeatedly was prescribed medications that clearly had drug interaction warnings that matched my ailments or would that make me look paranoid and suspect?

Heck, I'm terrified that if they order more sleep studies I just won't sleep at all for fear of not sleeping the way I usually do!

After years of being mislabeled and misdiagnosed, and years of painful unnecessary tests and treatments, I am very concerned about appearing credible, especially since the discovery of my narcolepsy is so very recent. I'm terrified that this new doctor might misunderstand me and remove my recent diagnosis of narcolepsy. Upon being told I have narcolepsy, all my medical issues finally make sense and I've never been more certain of anything in my life than I am that this diagnosis is accurate. (I always knew those years of other diagnosises were wrong, but no one believed me.) I both hate and am relieved by my having been told I have this, and I feel certain now I might move ahead in the right direction to truly find solutions that will give me the energy, and normal life style I have always wanted. I'm terrified that after finally getting the right diagnosis a doctor might wrongly take it away thereby setting me further back.

I tried writing down my medical history, history of symptoms, diagnosis, medications, family medical history, symptoms when medicated, and symptoms when not medicated by going through my old diary entries and medical records. But the damn document is 8 pages long. If I go in with an 8 page well written document I worry this new doctor will question my honesty, suspect I've researched exactly how to appear to have a certain condition, and he'll think I'm crazy and/or faking it.

I want to be a good advocate for myself but I don't want to over do it and shoot myself in the foot. WHAT DO I DO?

[hannahpratt]

Umm... appearing credible? Credible? I think that is the most absurd thing I have ever heard. Narcolepsy is proven by Testing. It is not proven by your medication history; however, you still should inform your doctor of all the medications you have taken in the past so that you can, as you say, make the most out of your doctor's visit. If your doctor doesn't know about an adverse reaction you have had to a drug and/or bouts of depression he or she won't be able to properly address your problems.

[AckDreams]

My doctor recently diagnosed me after my symptoms became undeniable a few months ago when I choose to stop taking Ritalin and Provigil to see what would happen. He then went through my medical history and saw that a spinal tape done years ago showed I didn't have enough Hypocretin thus that doctor put me on Provigil (but never told me why) and also a sleep study I had 3ish years ago a doctor had me do to prove I don't snore and satisfy my insurance company and thus continue me on Provigil. It showed I fell into REM way too quickly. At the time the doctor then just said "you fall asleep really quickly, lets keep you on the Provigil" no one mentioned Narcolepsy to me. At the time I wondered what the fuss was about since I already thought of myself as a "champion sleeper!" (I used to be so annoyed that there was a need for a sleep study back then since I was convinced my issue was that I was a supreme sleeper, my issue was just a lack of energy and being prone to fainting. So it wasn't until I discovered what Narcolepsy was by doing my on web research and asking my current GP doctor about it that he looked through my medical history and put everything together. He's certain I have Narcolepsy but obviously wants me treated by a Neurologist familiar with this all (which is tricky because I live on a small island.)

Recently my GP doubled my Provigil so I was on 400mg Provigil, 40mg Ritalin LA, 300 mg beta blockers, by day and a new script of Prozac and Lorazapam at night... the result was I was bouncing off the walls and ended up in the ER. So now he has me on NO medications so that if/when the Neurologist asks for a new sleep study I can do it right away. Travel on and off this island is very tricky so there's a def. need to make the most of medical appointments and trips off island.
In the mean while things are pretty awful right now with no medication. I've been on Ritalin and Provigil for so many years I had no idea just how bad my symptoms were till now. I'm in bed about 20ish hours a day and I cataplexy far more right now then I ever have in my life. Trying to stick it out for the next 3 weeks is going to be really really hard, but my doctor thinks it's worth it, especially if I can get a detailed account of exactly what my symptoms are when unmedicated (which I've never been until now.)

[AckDreams]

When I look back at my various trips to the ER I'm so annoyed no one discussed Narcolepsy with me. Like when I landed in the ER with a broken hand and ankle and they asked what happened and I said "I was having so much fun horseback riding I fell asleep and fell out of my saddle" why the heck didn't that trigger a red flag to them. Or when I was in the ER with another broken ankle because "I was arguing with my husband and he made me so angry I collapsed" why didn't they focus on why I collapsed instead of just fixing my ankle? Or how about the fact that ever time I ever had an MRI or X-ray I always fell asleep and later was told they had trouble waking me!? Why is it whenever I said "I am so sleepy and no amount of sleep ever seems to help, and sometimes when I wake I feel like I can't move." How come I was always told I was depressed, even when life was great and I was in a good mood. Why is it whenever I talked to a therapist about how I felt overwhelmingly instantly exhausted and like I need to get to a bed ASAP anytime I felt angry and I felt like I couldn't move my arms when I'm in an argument, no one said "hmmm that sounds neurologic nor neurotic!" Most people don't secretly try and rush to a ladies' room floor to collapse into a "quick nap" anytime their boss infuriates them! Most people don't get nervous they might face plant into the floor whenever they are blissfully happy!

Even as a kid it was missed, I used to always get mocked for wandering, sitting or lying down in the outfield during little league and sleeping at my desk all the time in grammar school, looking back, that's just not normal, how could no doctor have thought of it as a symptom instead of a behavioral problem?

So many years wasted internalizing and questioning my own sanity needlessly! So many years wasted blaming myself and feeling the need to hide and disguise my symptoms! Ugggg!

Seriously, I have a hard time understanding why it is no one IDed this sooner and I really struggle to keep myself from focusing too much on it.

[sleepless sleeper]

Do I share that in college I took Ecstasy and LSD four times NO and I have a family history of alcoholism WHY? again, NO - or do I keep that to myself YES because I wouldn't want to be labeled as a drug seeking addict and have a doctor not want to prescribe me something that might help my narcolepsy symptoms? Correct. Do I mention to them how over the summer I was worried maybe I was too dependant on my medications and for a while I thought I was an addict but when I decided on my own to stop taking all my medications my Narcolepsy symptoms were suddenly profound - or would that make me look irresponsible? n meds are important to take in order to survive in life. unfortunately, we need to take them. you are not an addict. you can tell him about what happens when u get off your n meds. u do need med holidays for stims.

Do I share that I've been diagnosed repeatedly as having bipolar and depression even though no amount of therapy or antidepressants ever made any positive difference in my life good lord no- or do I keep that to myself for fear that my narcolepsy symptoms may be diagnosed as psychological? correct to an extent. there is always the possibility that you'll get a doctor that will understand that, but most likely you won't. once you establish a relationship with him, then you can mention it, and he'll most likely know that people with invisible disabilities are treated this way predx. bipolar and depression are very common misdx for narcolepsy.

Do I share the full extend of my dozens of random ER visits for random injuries caused by fainting/cataplexy, misprescribed medications, and falling asleep mid-activity this is hand in hand with n with cat. this you can tell him and how doctors and family members often accused me of not being truthful but looking back my current doctor and I think it was due to narcolepsy?? as long as it is kept brief and in context of now you believe it may be narc. he's a neurologist and needs to know at least that things were happening. what others thought, etc, is a bit much to get into.

Do I share my frequent struggles with doctors who have prescribed medications that gave me bad side effects and how very often I researched it all on my own only to discover that I repeatedly was prescribed medications that clearly had drug interaction warnings that matched my ailments or would that make me look paranoid and suspect? NOunless he prescribes you those meds. be sure and tell him what meds you are allergic to. let him be the doctor because doctors, especially neurologists, don't like being told what they ought to know. at least, that is the way that they look at it. it is a fine line. you know what you can do if he prescribes a med that you know interacts negatively with others is say something like "i took that before and it had this effect on me" and then describe the effect.

Heck, I'm terrified that if they order more sleep studies I just won't sleep at all for fear of not sleeping the way I usually do! Don't worry about what isn't here, does not exist.

After years of being mislabeled and misdiagnosed, and years of painful unnecessary tests and treatments, I am very concerned about appearing credible,...

I tried writing down my medical history, history of symptoms, diagnosis, medications, family medical history, symptoms when medicated, and symptoms when not medicated by going through my old diary entries and medical records. But the damn document is 8 pages long. If I go in with an 8 page well written document I worry this new doctor will question my honesty, suspect I've researched exactly how to appear to have a certain condition, and he'll think I'm crazy and/or faking it. trust me, do NOT tell them this.

I want to be a good advocate for myself but I don't want to over do it and shoot myself in the foot. WHAT DO I DO? Try your best to start with a clean slate. all the stuff that you mention bears no weight on your condition. a new slate also allows you to let go of all those years of hurt and pain. most pwn understand all of what you went through all to well. it is not fair. it's been a nightmarish life, but now you do have a dx and you can chose to start a new life at this moment. do not stress over what is not happening. just let go and live your life with your new dx. things will be alright. maybe not great but okay. remember that n is a lot more than what your doctors tell you, but your doctor is your number one source of appropriate information. ask him/her questions, and do not get out of touch with the pwn community. take a deep breath and tell yourself that you are not broken. you are not crazy. there is much more to you than those eight pages. also, if you don't have much hypocretin (which your dumbass doctor should have told you because i bet you're still tired just on provigil, right?) you're most likely going to experience other issues as well in addition to the fact that you may even have other autoimmune health conditions. all that other stuff that you mention is old. it's gone. it was a bunch of misdx and hooey and meanness from others. screw it and go forth into your new life with your head held high.

all my comments are based on my personal experience. of course, yours and the experiences of others may be vastly different. other pwn may have different advice to give, and hopefully, you'll end up with better doctors than i did when i first got dx.

[kiragrace]

I absolutely agree with sleepless sleeper and it is also based on personal experience.

DO NOT go into your illicit drug history.

DO NOT go into all that detail about all those other things.

DO mention cataplexy examples.

Don't do a lot of talking. Try to listen and answer what they ask you in what I call "bullet points" - keep it short and simple, like an outline.

Good luck!

[kiragrace]

also, doctors probably missed it because they aren't familiar with narcolepsy.....sad, but true, for a lot of us.

[Since1967]

Typically, you be asked for and would list all current medications and any known drug allergies or sensitivities.

Be clear what your purpose is. Do you want to get a diagnosis? Or is that already done? Then do you want treatment? Do you want to review or change current meds? Figure out the purpose of the appt and keep it simple. Perhaps you need to hire a separate provider to be a personal coach or patient advocate or therapist to clarify and focus your objective(s) if that is feasible. Good Luck.