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#1 drago

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Posted 08 August 2009 - 07:21 PM

Ok, so sparing you the angry feelings I just wrote down in my LJ, I'll recount my story:

- My doctor who dx'ed me with narcolepsy is in state A. She knows that I move around and offered to mail me my prescription every month until I settled down for a span of time in November.

- I moved away from state A in to state B. I received my prescription via mail for 3 months in state B.

- I moved from state B to state C, where I currently am now. I am in Alaska for 3 months doing some temp work.

- I called the office of my doc last Friday (31 July) and spoke to a nurse. I updated my address and told her that I needed my prescription for Sunday, 8 August. I did this because it takes ~5 days sometimes to get mail from State A to state C (Alaska), and I wanted to make sure I had enough time to get the prescription.

- Today, Sat 7 August, I receive a letter that says, "We are unable to prescribe medications outside of the state of [State A]. We recommend that you establish care with new physician in Alaska who can manage your medical needs." This letter is signed by a RN that I don't know, even though it's on the header of the location of my doc who dx'ed me.

Naturally, I wanted to know why this sudden change of prescription rule occurred, not to mention that, given the information I left with the call WHY THEY WOULDN'T CALL ME ABOUT IT INSTEAD. I called the general building they work at, but it is a weekend (and State A is four hours ahead time zone wise as State C/Alaska). So now I need to get a new filling of my prescription on tomorrow, Sunday, and I don't have it! I don't even have a method of contacting my doctor. Everyone at the building keeps telling me "this is an office matter."

GREAT! But this office matter is making AN EMERGENCY/DANGEROUS situation for me! I live with roommates who I just moved in with, so I don't know (or trust them... no offense to them, but it's true). Also, I won't be able to get to work Monday w/o my medications. I won't be able to do anything... I need to be able to go up and down stairs (which were a problem for me when I switched from Provigil to Adderall and I had to adjust to it).

I'm worried that not taking adderall will kick back into major withdrawls or something.

I've contacted the on-call doctor for the building my doctor works at, and s/he is suppose to get back to me as soon as possible. But I am not sure what I can do. Anyone have any advice? Anyone know who I should call? Please, ASAP - I am not sure what to do...

Also, I found 3 neurologists in my area... but what do I do if I can't get an appointment? hhhgh...

... Ugh ...

drago

#2 Saraiah

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Posted 09 August 2009 - 12:22 AM

Ok, so sparing you the angry feelings I just wrote down in my LJ, I'll recount my story:

- My doctor who dx'ed me with narcolepsy is in state A. She knows that I move around and offered to mail me my prescription every month until I settled down for a span of time in November.

- I moved away from state A in to state B. I received my prescription via mail for 3 months in state B.

- I moved from state B to state C, where I currently am now. I am in Alaska for 3 months doing some temp work.

- I called the office of my doc last Friday (31 July) and spoke to a nurse. I updated my address and told her that I needed my prescription for Sunday, 8 August. I did this because it takes ~5 days sometimes to get mail from State A to state C (Alaska), and I wanted to make sure I had enough time to get the prescription.

- Today, Sat 7 August, I receive a letter that says, "We are unable to prescribe medications outside of the state of [State A]. We recommend that you establish care with new physician in Alaska who can manage your medical needs." This letter is signed by a RN that I don't know, even though it's on the header of the location of my doc who dx'ed me.

Naturally, I wanted to know why this sudden change of prescription rule occurred, not to mention that, given the information I left with the call WHY THEY WOULDN'T CALL ME ABOUT IT INSTEAD. I called the general building they work at, but it is a weekend (and State A is four hours ahead time zone wise as State C/Alaska). So now I need to get a new filling of my prescription on tomorrow, Sunday, and I don't have it! I don't even have a method of contacting my doctor. Everyone at the building keeps telling me "this is an office matter."

GREAT! But this office matter is making AN EMERGENCY/DANGEROUS situation for me! I live with roommates who I just moved in with, so I don't know (or trust them... no offense to them, but it's true). Also, I won't be able to get to work Monday w/o my medications. I won't be able to do anything... I need to be able to go up and down stairs (which were a problem for me when I switched from Provigil to Adderall and I had to adjust to it).

I'm worried that not taking adderall will kick back into major withdrawls or something.

I've contacted the on-call doctor for the building my doctor works at, and s/he is suppose to get back to me as soon as possible. But I am not sure what I can do. Anyone have any advice? Anyone know who I should call? Please, ASAP - I am not sure what to do...

Also, I found 3 neurologists in my area... but what do I do if I can't get an appointment? hhhgh...

... Ugh ...

drago


Hi Drago - I'm afraid I don't have any particularly good advice, except to be as calm as possible when you talk with the people at the doctor's office. It's really tough to do, but try to do the best you can on Monday to explain in a very calm tone of voice to every person you have to talk with at your dr's office that 1) there must have been a miscommunication among the staff in your dr's office regarding your agreement re: your medication with your dr, and 2) that you must speak with your dr absolutely as soon as possible, because the lack of medication constitutes an emergency/serious danger for you. It's really hard to speak calmly when you feel like screaming, but over long experience with losing my temper I've learned that dr's office staff tend to be a lot more helpful if I remain calm. I irritate them less that way, AND they become much more aware that they're acting ridiculously when I can calmly lay things out (repeatedly) for them.

I just went through a less scary problem with my doc 2 days ago. The doc had filled out my FMLA with an unbelievable number of inaccuracies. If I'd submitted that paperwork to my employer, they would have had 5 different reasons to fire me on the basis that I was lying about various things (which believe me, they have tried to do before) . I haven't lied about a thing, but my sleep doc must have filled out the paperwork using someone else's file. So I called the doc's office, and the two receptionist/secretaries gave me a very hard time, insisting that the doc had gotten everything right. I stayed cheerful, cheerful, cheerful, and patiently began describing the problems. They finally backed down, and gave me a way to communicate with the doc and request the corrected form.

I hope that the whole problem really is just a big miscommunication with new staff at the doc's office. I'll be thinking of you!

Saraiah

#3 merrymom1013

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Posted 09 August 2009 - 02:47 PM

I'd keep trying to get heard by your old doctor (& agree about the importance of staying calm). In addition to calling, I sometimes have better luck getting my whole message accurately heard by emailing or faxing the doctor. You might fax the doctor and then followup by phone.
You say there are some neurologists in your area- I'd try those, any sleep specialists and I'd also try a local family physician. While all may be reluctant to prescribe stimulants to a brand new patient, perhaps one would be willing to look at whatever records you have & call your old doctor to confirm your diagnosis & need.

#4 drago

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Posted 09 August 2009 - 05:51 PM

I'd keep trying to get heard by your old doctor (& agree about the importance of staying calm). In addition to calling, I sometimes have better luck getting my whole message accurately heard by emailing or faxing the doctor. You might fax the doctor and then followup by phone.
You say there are some neurologists in your area- I'd try those, any sleep specialists and I'd also try a local family physician. While all may be reluctant to prescribe stimulants to a brand new patient, perhaps one would be willing to look at whatever records you have & call your old doctor to confirm your diagnosis & need.


Thanks for your replies.

The biggest problem I had was that it was Saturday, and my doctor's office wasn't open. My doc is connected to a hospital, but a lot of the people there kept telling me this was an "office issue." I finally said, "Ok, well, this is an office issue that's putting me in a dangerous medical situation, so please forward me to someone who can help."

I am afraid "staying calm" did not happen at all to me. When I get stressed out, I either fall asleep or sob (angry sobbing is the worst). I feel badly for sobbing at a few people, but I explained it was frustration and nothing more...

For people in this situation in the future, I wanted to write down what happened:

(1) I got the 'head nurse' person and explained to her my situation. She said she would look into it (eg-see if she could pull up my dr's notices and such for me) and call back.

(2) About 45 minutes later, a new nurse was head nurse. She called me back and told me that the letter was sent because states won't fill prescriptions across state lines. I told her this isn't true - State B filled my prescription, they just needed the prescription to be hand-written, which is why I had my doc mail me the prescription. Also, I pointed out, people travel for work/pleasure/whatever all the time and need to be able to fill prescriptions in and out of state, so what sense would this law make in general? She concurred... so, She said she'd try to get my doc, and try to talk to someone else who might know more about this.

(3) She calls back. She couldn't get my doc, but even if she could, she wouldn't be able to fax it - it has to be hand-written. I told her, yes, I knew that, THAT'S WHY MY DOC MAILS THEM TO ME. Meaning, whoever wrote me that letter had the wrong facts--and now I'm in the same position as before. She was very comforting and knew that I was in a very bad place, so she told me another thing she could do was this:

-- I go to the emergency room (since no docs were open Saturday night)
-- I talk to the doctor, give her/him this nurse's pager number & number for the hospital, they would fax over my files, which would include my prescription, my dosage, and the fact that they did not refill it this month due to stupid, STUPID state-border issues, which actually weren't issues... aka, there had been a mistake.
-- The ER doc would write me out a prescription.

Ok, so, I asked her a lot of questions about this scenario. I pointed out the unlikelihood of an ER doc fixing my prescription... LET ALONE FOR A DRUG THAT IS A STIMULANT... right? That's actually what the doctor said when he spoke to me. I explained the situation, had my IDs on me, and the letter, and the numbers. He asked me some pretty... well, I can't blame him for it, but mean questions -

"Why do you need the adderall so badly?"
"What happens if you don't take it?"

Luckily, at this point, I was so frustrated I was sobbed out, you know? So I explained my condition, and how it was effected by my last 'drug holiday' (aka when I was sick and vomitting and didn't digest the pill) and how it basically hurt my sleep cycle for much longer than that day. I also explained that this situation would be worse, since I live so far away, the best case scenario would be my doctor overnighting me the prescription Monday, which means I would get it Tuesday sometime, which means I would probably not get my pills till Wednesday. (Because the pharmacy generally has to call docs from out of state to confirm they are true. AK is -4 hrs behind the east coast, so that would be another day of waiting.) In short, in the best case, I would be out two days of work and have no gaurunteed way of getting to the pharmacy anyway.

Thankfully, it all worked out and they gave me a week's worth (until my dr's office sends me the next one... which I will be FOLLOWING UP ON). Unthankfully, I wasted a ton of medical resources (for emergency situations, no less) over a clerical error that just was late in showing itself. I also am sure I'll have a nice medical charge for just going to the ER - as health insurances often do.

BUT-the good news is... SUCCESS! I am awake for another week.

:-\ Just frustrated at the idea that this can happen again...

drago

#5 Mike M

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Posted 10 August 2009 - 09:32 PM

I am thrilled that things worked out, but am sad that your doctor's office (and the health care industry, in general) failed you. Having exhausted myself dealing with similar issues on a far smaller scale, I commend you for your incredible ability to navigate a horrible scenario. I hope you will document (fairly and clearly) the entire situation and then send it to the attorneys general in states A & C, as well as the doctor's office, the hospitals in states A & C, and the federal government. By doing that, you will provide an obvious record of these events and their impact on you. That might help to prevent such situations in the future. Thank you for sharing this.

#6 sleepless sleeper

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Posted 13 August 2009 - 02:47 PM

I have had to go through this regularly. My sleep doc is in another state. Sometimes he gets behind filling out new scrips. Once a month, every month, mailing them to a pharmacy in my state. Then I have to wait for the RX to mail it to me becuase the nearest one is one and a half hours away.

I just had a problem because my doc switched me from dextro to adderall. he came from salt lake to jackson for the day, gave me the new script, we took it to the local rx, there was a problem, they said they'd mail it once they talked to the doc. two weeks later , after talking to the rx on three occassions, the rx said that they didn't usually mail this type class drug out. ? what? Even the pharmacist said she would. Of course she wasn't there to straighten that problem out. What a nightmare. They did mail it to me fortunately. What should have been an immediate fill turned into two weeks. Thankfully, I had enough dex to last me that long.

When I was out of state to help care for my mother in her last few months, I ran out of meds. Wow. Fortunately I used to live in that state and I used to see the GP there. He reluctantly gave me a ten day supply because my sleep doc was out on vacation with no back up that would help me. When he did get back it took a couple of weeks to coordinate things. I needed my meds so very badly at that time because that is when i developed insomnia.

The questions "Why do you need these meds" and "What happens if you don't take these meds" are understandable but ridiculous. I'm like you: I don't handle stress very well anymore. I don't handle it at all. I would not have said these things, but they would've been running through my mind: "have you ever heard of narcolepsy" "what happens when people try to function with inappropriate amounts of sleep", and the like. I understand a doctor being leary of new patients asking for stimulants, but if they have the info in front of them, you have proper I.D., you have a medical professional that can verify what's going on with copies of prescriptions, then what is the problem? Especially if it's for a short term. It is stressful and frustrating. It is scary especially if you have no one to help you. I can completely relate to the problems that are inherent from living in an isolated place. You have no immediate resources, and no next to immediate resources except a visit to an emergency room, which alone can be horribly time and money consuming. Even for me, though, the nearest hospital is an hour and a half away. It sounds like you found a nurse that was helpful and gave you the only solution available at the time. Good going on the persistency, but they will remember you for it so try your best to not let it happen again even though it was not your fault to start with.

Be very careful about contacting an attorney or attorney general. Your doctor can choose to not treat you. My dad almost died because a doctor said his brain tumor was the flu. He came to the hospital that night when my dad had emergency brain surgery and was so upset. He said that he should not have been at work that day because he was upset because his father had just died. We did not sue because we knew that it would limit our options in recieving appropriate health care for my father. My mother had her neck broken and was dx'd with whiplash. The doctors then treated her as hypochondriac or med seeker because she kept complaining of pain. A year went by and the bone grinded down to bits and ate away at nerve and muscle tissue causing more problems. She was dx'd then with obvious broken neck. She had three surgeries, the last of which they used FDA unapproved metal which caused toxicity issues. She didn't sue for inappropriate dx because she would not have had anyone to treat her, and by the time we found out about the metal, she was worn out and didn't care. I know that reporting to attorney general is not the same thing as suing, but the end result can be the same: damaged relationship with health care provider. Reporting is something that I think is a great idea but make sure that you will have a back up doctor to treat you just in case. We lived in Houston, TX, when all this happened with my parents, which is a medical mecca, but word travels fast in the medical community.

It's the reality of how things can be.

Good luck, and I wish you the best in finding a positive solution. My situation is not nearly as complicated as yours, and I still have problems getting my scripts.

#7 kmoonshine

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Posted 15 August 2009 - 04:07 PM

Its always a good idea to establish a relationship with a general family practice doc wherever you are living - even if it's for 3 months.

Last summer I received a new doc (a resident; my previous doc moved to NY), and this new doc was supposed to manage my meds. This new doc was terrible, didn't keep appointments, and never returned my phone calls. I tried to get in touch with her for 2 weeks for a med refill and she never called me back. So, I went to my family doc (who knew what meds I took). This doc had no problem writing my prescriptions for me - she knew who I was, knew what I was taking, and I had never asked me her to prescribe controlled substances before. I did this one time, and I truly was in a bind.

I now see a neurologist who specializes in sleep medicine. I call them 7-10 days for my refill prescription and they mail it to me (and my doc is 5 miles away from me).

I work in the Emergency Department and I hate it when clinics tell people to go to the Emergency Room when they don't want to deal with the patient or want to get out of work by 5pm because it's a Friday. Seriously, are we supposed to clean up everyone's messes?

#8 drago

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Posted 16 August 2009 - 01:31 AM

The questions "Why do you need these meds" and "What happens if you don't take these meds" are understandable but ridiculous. I'm like you: I don't handle stress very well anymore. I don't handle it at all. I would not have said these things, but they would've been running through my mind: "have you ever heard of narcolepsy" "what happens when people try to function with inappropriate amounts of sleep", and the like. I understand a doctor being leary of new patients asking for stimulants, but if they have the info in front of them, you have proper I.D., you have a medical professional that can verify what's going on with copies of prescriptions, then what is the problem? Especially if it's for a short term. It is stressful and frustrating.


Yes, and the thing that really frightened me was that if anyone along the way though I was addicted and "needed" the drugs for my addiction, they could just stop helping me. I was so freaked out about breaking down in front of the emergency room doctor when he said things like, "why do you need them so badly?"

...Do you think being awake and alert is an important factor to human function? Well, that's why I need them, because without them, I can fall prey to sleep attacks, EDS, and even if I am very lucky and dodge all that, my alertness DROPS LIKE A ROCK. He asked me if it is "really that bad without them" (Seriously? Are you a doctor? Do you understand narcolepsy?!) Since I had calmed down, I explained to the guy that it's like taking antibiotics: The few days after you finish the pack of them, you can get opportunistic infections, like stys and stuff. And the few times I have not taken my medication (like when I was sick, or when my doc instructed me to stop taking my afternoon dosage for two days to see if I needed it), it has been 10x as bad as when I was dx'ed with Narcolepsy to begin with...

It is scary especially if you have no one to help you. I can completely relate to the problems that are inherent from living in an isolated place. You have no immediate resources, and no next to immediate resources except a visit to an emergency room, which alone can be horribly time and money consuming. Even for me, though, the nearest hospital is an hour and a half away. It sounds like you found a nurse that was helpful and gave you the only solution available at the time. Good going on the persistency, but they will remember you for it so try your best to not let it happen again even though it was not your fault to start with.


I figured they would remember me for it - I don't blame them. :-\ But the trouble is that I have very few options, except to badger the place where my doctor is more...

She didn't sue for inappropriate dx because she would not have had anyone to treat her, and by the time we found out about the metal, she was worn out and didn't care. I know that reporting to attorney general is not the same thing as suing, but the end result can be the same: damaged relationship with health care provider. Reporting is something that I think is a great idea but make sure that you will have a back up doctor to treat you just in case. We lived in Houston, TX, when all this happened with my parents, which is a medical mecca, but word travels fast in the medical community.

It's the reality of how things can be.

Good luck, and I wish you the best in finding a positive solution. My situation is not nearly as complicated as yours, and I still have problems getting my scripts.


I doubt I'd sue over this. What actually happened was that the NP didn't call me when my prescription was denied - she instead wrote me a letter (!?) and sent it by snail mail. Had that not happened, had she called, I would not have had this problem. I think the best I can do is report to the hospital head that it is completely and utterly inappropriate to deny a prescription refill by snail-mail as she did. And, if that is the policy of the hospital, they should seriously change it. A lot.

I called the doctor's office and found out that the issue was more than just the NP. The nurse who took my message didn't tell me, for example, that my doctor has been on leave for a month and a new doctor is serving in her place. Had I been told that, I would have asked to speak with the head nurse person there; I wouldn't have left a message at all. So the miscommunication was not just this NP's fault - and while I was incredibly angry at the entire situation, and the fact that I did not even get a CALL about it - I don't see a point in sueing or anything like that.

Now, if there was someone I could report to on the issues of "THE SYSTEM" that made this whole scenario so dangerous, that I would do. Why can't my doctor fax my prescription to a pharmacy? Why are there "in" and "out" of state issues at all?! Why can't I get my prescription for more than one month at a time?! I mean, if they have to be separate slips for each month - fine, just give me more separate slips for each month. Or something. :-\

The thing is that if I functioned in the System as people tell me I should, and the System worked... I would be ok with it. But the thing is - I did exactly what I was asked to do, and the System totally flunked hardcore. That's the issue for me...

Its always a good idea to establish a relationship with a general family practice doc wherever you are living - even if it's for 3 months.


I often get this advice, but here's the problem I see: If I move 2-3 times a year for work that runs approx. 2-6 months at a time, I will be seeing 3 separate general health care docs a year, at least two for absolutely no reason. (As in, I don't need to see them for my yearly check up.) Even if my health insurance remains the same, I'll be paying $50/yr in co-pay (at least) for appointments for no reason. And just because I am dx with narcolepsy doesn't mean a family practice doctor would help me with a prescription issue - she or he might want to refer me to a local specialist instead of help me with my prescription... and, well, I can do that myself (with my insurance anyway).

To be entirely honest, the only reason I have this issue at all is that this particular prescription I need has to be printed on special paper, with my dx on it, signed by a doctor. It can't be faxed, called in, or otherwise, and I need to get a new rx slip for it each month--I can't get a yearly, or 3-month, prescription for it. I'm on another (non-narcolepsy related) drug that I have no problems getting refilled - I even get the 3 month mail away prescription deal on them.

I work in the Emergency Department and I hate it when clinics tell people to go to the Emergency Room when they don't want to deal with the patient or want to get out of work by 5pm because it's a Friday. Seriously, are we supposed to clean up everyone's messes?


I also felt really silly about going to the emergency room and wasting resources dedidated to medical emergencys just because someone else made a clerical error. :-\

drago