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Confused... Need some advice.

AnonymousUserAAnonymousUser Posts: 49,082
edited 06/11/2012 - 8:40 AM in Pain Management
Hello Everyone,

I'm new here, obviously and in need of some advice.
Sorry this is going to be long.. to explain the situation.

I have a history of neck and lower back pain, but didn't try to get treatment until..

Last March I ended up in the ER because my lower back pain got so bad while I was shopping that I couldn't bend and I was getting shocking pains going though my body that made it very hard to find my footing so that I could stand, I've never felt that shocking pain before but I have had some intense pain in my lower back after standing and/or walking for a fairly short amount of time.

At the ER, they decided to test me for kidney stones.. did a urinalysis and it came back that I had a UTI. So the PA prescribes a anti-bacterial med and vicodin. I asked him why he didn't do an x-ray, I want to find out what's wrong with my back.. his answer was that's what the pain med is for.. Idiot.

I went to my PCP and her PA ordered an x-ray of my back.
Results.... she said spondylosis in my neck and lower back.
She ordered an MRI of my lower back. Results.. I have a herniated disc L5-S1.

I was referred to a neurologist that after I explained my symptoms of my neck and lower back, he said I should be checked for fibromyalgia. I had to insist that he order a MRI of my neck. He didn't do a very good exam so I asked my Pcp to be referred to another Dr that did do an extensive evaluation and ordered an EMG. The MRI of my neck came back that I have three herniated discs in my neck and spinal cord impingement.

In the mean time, I was prescibed percocet. I had to take a tox screen first because they wanted to make sure I wasn't taking any street drugs. For the first three months I was told to take one a day when needed for pain. My neurologist called my PCP and suggested that she give me an extra dose because it was wearing off and most of my day I was in pain. She did give me two a day and a lecture, told me only to take it when I really needed it and had me sign some half -Edited pain contract that she didn't give me a copy of.. now, she had told me several times she didn't like to prescribe pain meds and at one point she said I needed to see my neurologist for all things concerning my back. My neurologist saw it another way, and wanted my PCP to prescribe my meds.

Anyway.. I went in for a refill and saw a PA I had never met before, I took my urine test as usual. Well she came in and told me that she couldn't prescribe the meds because my urine came back negative for opiates. I basically told her that the test is bogus and that I had been taking my meds. She didn't want to hear anything from me and basically called me a liar without saying the words.
That was in Oct.. I had just signed a contract the month before because of the extra dose of percocet. The contract was signed in Sept and it's for three months.

I again said that I've been taking my meds and I don't understand.. Then she said that my urine was a little diluted. I asked if we could wait and I could take the test again. She told me no because my urine has never tested positive for opiates. I was shocked.

My PCP never mentioned anything about neg opiate result or diluted urine. Never said to me, maybe I should come in, in the morning instead of giving me a 2pm appointment.. never suggested maybe drinking less. She never ever told me to take the meds not missing a dose. She said take only when I needed them. However, my last prescription read twice a day. Every question I asked the PA answered with I don't know and it's policy. I walked out.

I did write a letter to my Dr asking some very specific questions and haven't heard back. Along with other questions I asked what my specific test results were and what test they used.. I asked if the test was oxycodone specific.. I asked if she sent it to the lab at the hospital for more senitive testing. I asked if she had my urine tested to see if it was really diluted. I asked why she would prescribe to me if she thought something was wrong with my urine sample or test. I also asked why she had me sign a contract and gave me medication if she thought I was already breaking it. She could have said something or refused me meds after the first neg test, second or third.. but instead had me sign a contract?
I also asked for a copy of my contract because I never got one. The PA had told me I could go to my neurologist, but when my neurologist called the office they said something to him to make him change his mind about prescribing to me.
I have not gotten an letter with an answer to my questions and a copy of my contract like I asked and I don't know why.. don't I deserve an answer? If they are going to call me a liar.. don't I deserve to understand why?

OK.. so now all I can do is sit on my backside and the symptoms have continued to get worse. I got my EMG and there is nerve damage. I don't have the results in hand. I was just told that the EMG showed nerve damage and I should see a surgeon.

I will never go back to my PCP.. She did refer me to the surgeon, I'm just waiting to get an appointment.

I'm afraid to go to this neurosurgeon because, what if my Doctor tells him that I didn't take my meds?.. it's a lie. I'm apprehensive about finding a new PCP because of this too.

Has anyone ever gone through this? I'm not a drug user, and this is the only time I've ever been prescribed pain meds except for childbirth and tooth extractions.

I'm so confused and stressed out.. in pain and have to wait to see another Doctor that I am so afraid will not take me seriously. I'm afraid that my PCP will prevent me from getting the treatment I need too. At least when I did have medication I could at least go shopping or do my dishes.. so many simple things that I took for granted before I can't do now.

I'm just going on and on at this point... Thanks for reading. Any advice? Can someone tell me why I would test negative when I was taking my medication?

Thank you,
Sharon

Post Edited for Inappropriate Language by Authority Memberhaglandc
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1

Comments

  • I would demand, yes DEMAND all your records from your PCP and anything clear back to your er visit.
    Get it all, then you will be armed with the proof of how low your scripts were, and know what the test results are. Using those, hopefully you live in an area where you can get access to more than one or two doctors. Keep looking till you find a fit. The only thing you want to do is to make sure not to actually ask for pain meds. You want to be treated for your pain, be it PT, surgery, whatever.

    Asking for pain meds raises big red flags.

    The records are YOURS, so go get them!
  • This is indeed a tough situation to be in and I'm a bit surprised that they would put you on a pain contract so soon. I didn't have to do one until I had my first appt at a pain clinic and this was around 10 months since I had disc herniations and a surgery.

    Anyways, you did mention you had a bladder infection. When this is going on, we're told to drink extra fluids. Certain medications can alter urine screens or give false negatives. Was your bladder infection going on at the time of the negative opiod result of the urine screen? What antibiotic where you on? I think this is important and relevant questions that could help you out of this mess. What dose of Percocets are you taking and how often do you do?

    I also believe that you're being ping ponged between doctors as far as who gets to get out of prescribing your pain meds. Some doctors are okay with it while others are absolutely against them and quick to say no way.

    Unfortunately I have the feeling that you won't get any cooperation from your pcp and this will hinder you getting treatment for your back problems. It would be a whole lot better if they would let you clear your name and solve the mystery of the urine screen. Anytime another doctor looks at your med records from pcp, they will see the red flags. I also agree in getting all the records and films and try to get in with another neurologist, spine center, or pain clinic. If that doesn't work, you might have to start over and see a new pcp, sit down and honestly go over everything that happened, and hopefully get him/her to advocate for you and give you a referral to any of those specialists.

    You do have a serious medical condition that needs to be treated no matter what and this will entail different types of treatments such as meds, PT, spinal injections, or even surgery if deemed necessary. Don't let no one stop you from getting the care that you need and remember to be open minded to any recommendations. Take care
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  • dave said:
    It's a shame you have to go down this path this way. Some Doctors just don't like to prescribe opiates. Have you done any Physical Therapy for your problems? If not, that surprises me. The scripts will make moving around easier but will do nothing to address the problem. Definitely get that appointment with the neurosurgeon and start searching for a new PCP. I would be honest with any new Doctors so they are aware of everything.

    Merry Christmas and Happy New Year!

    Dave

    Hi Dave,

    Yes, both my PCP and my PA said up front that they don't like to prescribe pain medication. My PCP would lecture me on addiction telling me to only take it when I need it. I didn't want to build a tolerance to it never mind get addicted. I wanted to be able to take the lowest dose possible and it to be affective until I could get all the testing and everything done. I didn't recieve pain mediction until my MRI came back.

    I asked for Physical Therapy and the PA acted suprised.. she said "You want to go to physical therapy?" lol I told her of course if it will help. I went to physical therapy and my therapist said that the referral said I have a back strain. I was there for my neck and my lower back, both with herniated discs with nerve involvement. I went for 6 weeks.. and I asked if I was done because I only had so many appointments that the had written down for me. They said I was all set. Over a month later, my PCP asked if I had a re-evaluation and I told her that they said I was all set. She called the PT department and they told her I missed my last appointment, an appointment that they never gave me. Nice, huh?

    I agree.. The medication only helped to prevent the pain from coming on so quickly, enabling me to get things done. The pain was still there and still got worse throughout the day but it was bearable.

    I had to go to a neurologist first and then I got an EMG, and now I am waiting for my pcp to send a referral to the neurosurgeon that the neurologist suggested. I'm definitely going to look for a new PCP but I need my present PCP to finish with referrals unfortunately.

    I do plan to be honest with whatever Dr I have because I didn't do anything wrong. I guess they will believe whatever they will believe.

    I'm just upset because I'm not a liar and they didn't believe me. Don't get me wrong, it would be nice to have some meds to get rid of pain when it gets to much... but mostly I'm upset at being called a liar.

    Hope you had a Merry Christmas :-)
    Happy New Year to you too..

    Sharon
  • Wrambler said:
    I would demand, yes DEMAND all your records from your PCP and anything clear back to your er visit.
    Get it all, then you will be armed with the proof of how low your scripts were, and know what the test results are. Using those, hopefully you live in an area where you can get access to more than one or two doctors. Keep looking till you find a fit. The only thing you want to do is to make sure not to actually ask for pain meds. You want to be treated for your pain, be it PT, surgery, whatever.

    Asking for pain meds raises big red flags.

    The records are YOURS, so go get them!
    I asked for my medical records in writing, I sent it certified mail so I could have a record of receipt.
    That was well over a month ago, and I've heard nothing back.

    I already have x-ray, blood tests, MRI's.. anything like that, I got from the hospital where the tests were performed. The EMG, I have to get a copy from my neurologist.

    I think I'm going to go out of the area for a new PCP.. with my insurance only a few take it in this area.
    Will Physicians wonder why I'm going out of the area for a ner PCP? I hope not.

    I always said I wanted to get this fixed.. lol Shots or whatever but I want to get it done ASAP. I remember looking at my DR and saying I don't want to keep taking meds for this they make me feel loopy. But first things first.. I don't know if it's my insurance or what.. but it seemed that everything went really slow. Waiting for this test or that test, waiting for a neurologist appointment, taking PT.... then finally waiting for my EMG. In April it will be a year since I started trying to get treatment.
    The pain has increased tremendously, and the pain in my leg has gotten much worse and has spread further down my leg to my foot. Ugh..

    Thank you for your response and encouragement,
    Sharon
  • I was suprised that they would want a contract.. I really had no clue.

    I had to take a urine test and have a MRI first time they even considered giving me pain meds.

    I had been prescibed 5mg percocet once a day from June to Aug. Sept, my neurologist called and asked my PCP to add a dose. This was after my PCP told me to take up anything having to do with my back with my neurologist. So when I went in to see my PCP for my next appointment in Sept, she gave me a prescription for two 5mg percocet a day.., she told me I had to sign a contract and gave me her big lecture like every time before.. telling me to only take it when I really needed it. Which I did.. I still had a weeks
    worth left when I went for my last appointment. I was told that my PCP wouldn't be in so they had to schedule me with a PA that I had never seen before. I tested negative for opiates.. and was told that I never tested positve so they couldn't prescibe pain meds for me ever again. I was in shock. I said "NEVER tested positive?"

    I had four tests all together.. first three I was taking one a day. The last test I was taking, two a day. For the last week I took it every day because the EMG left me in
    quite a bit of pain. I took two the day before my urine test, and the urine test was at 1:30 PM. All my appointments with this DR were at 1 PM, 1:30 or 2PM.

    UTI.. I didn't have a Urinary tract infection when I tested negative. That was months before.

    I agree that whatever was written in my record after this may hinder my getting treatment. But on the other hand, I'm in way too much pain and can't really do anything but sit on my butt.. and even then the pain in my lower back and leg is really getting out of hand, I can't even sleep at night. So I can't start over and wait another 8 months to get to where I am.. finally going to see a neurosurgeon.

    I'm hoping that the surgeon will just order some shots, and they can get done quickly.. and I will be all set. That's me thinking positive.

    I don't care at this point what has to be done, I just need some relief. I'm going to be honest with this surgeon.. If he asks why I'm not on pain meds I will tell him that I was taking one to two a day and tested negative for opiates and I don't understand why because I was taking them.

    That's all I can really do or say, right?

    Well, pain meds have been tried, PT.. it was ineffective and it really bothered my neck giving me more symptoms than I had before I started. I guess the next step is injections?

    EMG said I have nerve damage now.. will injections reverse it? Is this going to be like a bandaid, and eventually I will need surgery? I would really like to prevent further damage.

    I just wish whatever I have to get done to get rid of this pain will be done quickly. Because it's getting worse.. in Apr, I had a charlie horse type feeling in my left buttock.. now the pain goes all the way to my foot, so I know it's getting worse.

    Thank you so much for the advice..

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  • It seems they have been ignoring my written request.

    I asked my Therapist about a community support progam. She referred me and I now have a person who hopefully will help me with all of this.. I have a very hard time advocating for myself, obviously.

    In the letter I wrote them I not only asked for my records and for them to call me when they were ready, I asked some questions that I wanted answered in writing and of course a copy of the pain contract.

    I have already gotten copies of my records from the hospital where they sent me for tests. I have my MRI's of my neck and lower back, my x-rays and labs. I had requested any urine labs they may have and they told me they didn't have any, so not one of the suspect urine tests were sent to the lab for further testing for oxycodone. I still need to get my EMG results from my neurologist.

    I was taking one a day for the first three months, and then I was taking one to two a day for the last month. The day before I was tested I took two 5mg, one in the morning, the other in the afternoon.. I'm not sure what time specifically. They do the urine test right when I walk in the door, which was at 1:30pm for the last test. My appointments were always in the afternoon, 1pm, 1:30, 2pm.

    I did ask about blood and the PA said that she could order it but it would take a week to come back. Then I was thinking that I didn't know how long it would be in my blood, if my urine tested negative, would my blood?

    At that point I was so upset realizing that she was calling me a liar without saying the words. It all started to seem shady to me at that point.. my Dr not saying anything to me and having me sign a contract even though I've been testing negative all along. Every question I asked the PA was met with "I don't know" or "I know" (when I said it should be in my urine because I was taking it) and "It's Policy".
    I walked out. I'm not a liar and I don't care for how they were assuming I am one.

    I just want to get my problem fixed...

    Thanks, it's nice to feel validated Sandi :)

  • This whole situation makes no sense to me and I'm sorry that you have to deal with this on top of all the pain you're having.

    I think it's really odd to be put on a pain contract for 1-2 5mg Percocets a day. Your PCP must be paranoid. Mine had me on it long ago and I was taking 1 tablet every 4-6 hours as needed...with no pain contract, random drug screens, etc. He did say that he couldn't give them to me forever, and he had me waiting 3 months for an MRI and a referral to a back specialist. Never happened.

    I got fed up and found a spine specialist in the yellow pages and had my records sent there. Talk about dropping the ball majorly- it took 3 months for an MRI and diagnosis and I had to get it done by myself- disc herniations at L4-5 and L5-S1.

    Anyways, this was an uncommon situation. I wonder what happened to the urine screen labs and why can't they put the results in your records. Do you know anything about your blood test results? Surely they would be more sensitive than the urine labs.

    It also makes no sense that your pcp made no mention of the negative opoid results the last 2 times you did the test. There's no telling what's going on over there.

    What I learned from all this is that, even when the script says "take as needed" we better make sure we take at least one dose every day so that this same problem won't happen. Even so, 10mg a day of Percocets is a very low dose of narcotics to be on for this heightened type of vigilance IMHO.

    Sharon, the sooner you get in with the surgeon the better off you'll be because you can't afford to wait too much longer with all the problems you have. Please keep us posted and try to hang on the best you can. Take care
  • You need to get a copy of the pain contract that you signed,so you know what it says about your pain meds if i were you i would ask for a copy of the contract,i had to sign one to with my pcp,i was sent to a pain doctor they made me sign a pain contract,i already had one signed,so i refused to let them test me,if my primary doctor wants to test me i would let them,i think in my contract,it says you are supposed to take you pain meds as prescribed,it isnt fair they did that to you,i would suggest you fine a new doctor....
  • Your PCP has no idea how long perc's stay in the body. On the doses you describe averages are 12-36 hours, depending on liquid intake. You may want to have a lawyer write the PCP a letter and try to get the answers you need, or if your PCP is a member of a group practice they may have a patient advocate that you can contact, Good luck
  • The situation I find myself makes no sense to me either and it makes me sooooo angry. But it seems there is nothing I can do about it at this point.

    I do have an appointment coming up with a neurosurgeon.. which I had to call my PCP several times for an appointment.

    The practice my PCP works with, yes they are very paranoid. Urine tests even before any kind of pain medication. She told me because she was prescribing two a day she needed me to sign a contract. I believe that if she thought there was anything wrong she should have said something the first three neg test results, not wait till after I sign a contract and wait for the forth neg result which I'm sure she was expecting. I didn't see any big deal about signing a contract because I knew I wasn't doing anything wrong.

    I didn't get blood tests, and they didn't send my urine out for more sensitive testing... I'm sure the results from their quick test are in my records, probably just says.. negative.

    I feel like I was left hanging by both my PCP and my neurologist.. I had my MRI in April 09, had PT in June 09.. EMG Oct 09. The EMG came back that I have nerve damage, by then I was already off pain meds. Nice... and the pain is getting worse and worse everday.

    This is effecting my life in every way.. I can't even do simple things and it's so frustrating. I went to the grocery store the other day and had to hurry because I knew how much worse the pain was going to get, and the pain I had was making it impossible for me to concentrate...
    I've been snapping at my family for things I normally wouldn't.

    Thank you for the encouraging words... I'm hanging on the best I can.. even though I feel like I'm losing my mind at times.
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