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Ok, This Kind of Has Scared Me

Aug 01, 2008 - 8 comments

I don't know if anyone remembers, and certainly I wouldn't blame anyone, I only mentioned it in passing, but my neurologist dumped me when she found out I had hep c and she (I feel) lied about the reason.  This was in Sept of 2007 I believe.  Well in December of 2006 I had a couple of TIA's.  No big deal, but I had told her during our regular appointment and she made me go do a bunch of bloodwork and an echocardiogram and some other testing.  She never said word one to me after (and trust me, I quizzed her and asked for copies of the paperwork and she kept saying she didn't have it yet), but said that everything was fine.  

Now I should tell you that she and her husband have many many children and they are big NRA nuts.  I think they are Jehovah's Witnesses, and kind of "end timers" not that there is anything wrong with that, I just always wondered how they worked the possibility of transfusions in with that since they are both doctors (there is a bunch of anti choice lit all around the office - I haven't had a uterus in a while, so it never came up, lol).  Anyway, she had been a decent doctor until about two and a half years ago, and then understandably, I thought at the time, she had a terribly difficult time.  Her last child was born with a very difficult glaucoma that had to be operated on at Duke at very short intervals, just weeks apart at a time, over and over and over.  

And I would ask after her because I just felt so badly that they were having to go through that, so hard with such a tiny little one.  But her personality changed over the next year and a half or so and she became very umm... controlling isn't exactly the word, its kind of like she needed everything in her outside world to be very ordered, perhaps because of the chaos and difficulty in arranging everything they had on their plate at the time.  Only, she didn't have any self awareness of this.  None.  At.  All.  She was becoming harsher and rather more constantly curt in her interactions with patients, so different from her old persona, and I just saw her becoming more and more rigid.  So much so that when I came in to see her I structured my visit tightly just because she seemed to tolerate little that was distracting, or small talk, so I just wrote down my questions and tried to keep our visits short, sweet and to the point.  As it happened, she was one of the earlier people I told that I had been raped, before I went to the police because I had happened to have an appt with her and I wanted a referral to a social worker (which I used to be, oddly enough), or a program, or something.  She YELLED at me that I HAD to report it, that it was my responsibility, yadda yadda, which hey, I agree with, BUT, it certainly wasn't very nice or empowering the way she handled it - and I felt bullied at a time when I was very fragile and when I had come to her for help.  

And then when she found out at the next appt I had hepatitis c and also might not be able to get botox for the next year (I got it via my insurance for my migraines), she had her office girl call me three days later and drop me as a patient, saying that I had broken their narcotics policy (I didn't) and one of her main things was that I'd gotten this med, I can't remember what its called offhand, but I'll add it when I do.  oh yeah.  It was either fiornal or fioricet, but whichever it was, it was the one WITHOUT the codeine.  I PURPOSELY had it prescribed that way, and had been using it for years, but all of a sudden I have hep c so she needed to check with my pharmacy.  And I only use one pharmacy, so I wasn't trying to hide anything from her.  And in the spirit of being honest, there was one trip I had to make to the ER to get medication because she was out of town.  She had been my doctor for SEVEN years when this happened and I just got the distinct impression that she and her staff didn't want to risk injecting me and possibly getting a dirty needle stick, and I say this because of the way they acted when I told them, I didn't tell them until after I had received that day's shots and it was like they couldn't scoot across the room away from me fast enough.  Plus, why of all times would they have trumped up this deal when they did, unless it was about the hepc?

So tonight, I was looking through that lab work to see if there was anything useful that I needed to file, and I was amazed to find that in January of last year, I had an echocardiagram that didn't look like hell on earth, but it didn't look dynamite either, and she never disclosed it to me.  And at the same time, and this freaks me out more, my anticardiolipin antibodies came out HIGH.  Now, we had done this bloodwork and the tests because I had HAD TIA's.  Also, my dad and my grandmother both have heart disease, my grandmother has had a triple bypass, and dad has killed pretty much the bottom third of his heart and has a pace maker.  Or maybe this was indications of auto immune renal issues at the basis of my epogen dependent anemia (it wasn't miscarriages or fertility issues because I didn't have a uterus then (sorry for the tmi) and just one ovary and I have only had one pregnancy, and I carried it to term (my son Dylan).  But all of these anticardiolipin AB Igm were high, and the anticardiolipin AB IgA was also positive, but it was a low positive.  I guess I will fax these to whosewhatsit tomorrow so he'll have it since he's ordered some  of these same tests.

A question I have I guess is, is there any research on interferon or ribavirin use and the heart?  Because if I had some issues with mine before, maybe I should get it checked again now that I have finished treating.  I know the hepetologist told me he wants me to get my liver scanned every year because of my three tumors.  He said something weird that I don't even know if I can remember in order to replicate.  Something about the type of material the tumors are made out of being fibrous so even though they are benign they can bleed?  or no, I know.  It was, that if they get too big, they are too fibrous or, I think that was the word, to be effective at doing what liver tissue is supposed to do, so he wants to know, once a year, that I have enough viable liver tissue to do what the liver needs to do.  Because he said if they got too big they could take away from the liver's ability to do its real job.  But it looks just fine so far.  So no worries there, I just am about due for another this year,  

You know, some doctors are SO conscientious.  But how can some others live with themselves, like this lady, not even warning me, when they sit on a bad result that could literally affect your health if you don't (and I'm not saying this particularly thing will, just sayin') have the knowledge to make an informed decision about your health?  She never even told me which tests she was running when she drew blood for these, just saying it was a cbc.  I'll go to Birmingham and get them to check me out and I'm sure I'm fine, but I just don't understand playing with someone else's life.  It really upsets me.  I thought I couldn't be surprised any more, but I guess I can.  Oh well, going to bed.  I'll need to deal with this tomorrow when I am less upset.

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233616 tn?1312790796
by merryBe, Aug 01, 2008
well, not being informed is standard for my GP also.....and hasn't gotten better since diagnosis.
Last month she even brought up something about my thyroid meds, as if she'd forgotten I'd been her thyroid patient for 15 yrs.

I hear now you can ask for your whole record on a single disk.
I'm thinking of doing this, since I found with the paper copy about 5 things I had wrong that she never told me were wrong, or high.
If we get everything on disk it will help when going to the hospital....most hospitals around here still don't have access to our doctor records unless we go exclusively to THEIR doctors.

It's very frustrating, the attitudes and treatment, but for now there is so much wrong with me I'm afraid to go to a new one, who would have to learn all this history.
I have heard docs are cutting off LOTS of patients with substance abuse issues....they have average patient loads of 2000, and are tired of the pain pill crowd. She may have lumped you into it when you had all the gastro stuff and had to do the MS...
my doc cut my friend off cold because she took one pill that was someone elses (and a different pain killer)....which seemed really cruel to me not to mention dangerous to her patient. They are starting to do random  urine checks on patients they suspect of abuse.

In any case, I don't think it will ever be possible to entirely remove peoples suspicions because they have no way of knowing who was or still is a high risk user from the innocent or those who do care for themselves. There will always be some element of doubt in the minds of some no matter what. Now we know what a good looking straight guy with HIV must feel everyone thinks and assumes something not true of him...s-cks don't it!?

264121 tn?1313033056
by alagirl, Aug 03, 2008
what I try to do for new docs, is give them "trends" in my labs, and give them copies of any genetic, or other abnormal tests I've had historically, so having my own records from my different docs has been great.  She was bad about giving me labs though, and I wasn't super proactive about it because she said they were fine and she really hadn't done too many, except when I had a couple of TIA's and she did a series.  at that point she kept saying she'd get them together for me but never did.

And I don't think her dumping me had anything to do with pain medication.  The timing is just too weird.  It's like she went out and hunted for a reason to dump me (after me being her pt for seven years) since it was immediately after I told her I had hepc.  Either, I think, because she didn't want to expose herself to it if she slipped giving me injections, or perhaps even more likely because I wasn't going to be a good meal ticket since I couldn't do the shots she'd been charging my insurance company so many thousand dollars per session for.  and her practice is made up of very high volume, high expense treatments of this sort.  She gets in, does the shots, gets out, and doesn't even bother to do vitals and does little else in the way of listening or talking about issues (and her documentation was pretty horrid I found when I had them get my record - I immediately asked for my complete record s that in case i complained to the medical board, they couldn't go in there and change anything in it later)

There is just no explanation for me for why she called every hospital, pharmacy, and other physician in town just about, the week following me telling her I had hepc and I wouldn't be able to take the botox shots for at least the next year, that we'd have to manage my migraines without them, when I had been her patient for so many years, and of course, there just wasn't really anything bad there for her to find (but I found it embarassing and humiliating that she was calling people in my very small hometown ASKING them questions about me and if they'd ever prescribed to me), so she used something that actually did NOT violate her narcotic policy, a fiorcet prescription without narcotic in it (you can have it prescribed with or without) as the excuse.  And I called the doctor who gave me THAT prescription, because I had told him about my deal with her and why I couldn't have codeine in that, and he was furious.  He thought I should report it to the board and to the insurance company.  But at that point I was sick and just about to start tx, or just had started, and I just didn't have the energy to care.

And I have no substance hx.  And I don't drink or smoke.  I used to have one or two drinks if we took customers out, and I would alternate with diet coke, just because I have never had a good tolerance (one drink makes me feel a little tipsy) and I worried about driving (which only happened once every month or two anyway that we had customers in town) prior to getting hepc - so literally, I probably had fewer than 20 drinks a year, it was the easiest thing in the world for me to give that up when I was diagnosed, didn't even bother me.  I saw a couple of clients socially at night before I got too sick, and just drank diet coke - I just told them I was sick, so they wouldn't feel weird about drinking without me.  My iron level is still so high that my liver enzymes sometimes are still a tiny bit high, and sometimes normal, so I just feel that since I never missed not drinking, I don't want to give my liver anymore to filter since my liver and kidneys need to filter my regular prescriptions already (topamax and bp meds, and all of the other meds I'm on), as well as deal with iron deposits, and I don't want to stress my liver any more than I have to right now.  I get to see the hematologist Tuesday though so I am very happy thinking we get to work out this issue with the iron.

And the neurologist dropping me right before I began treating turned out to be a blessing in disguise, since I rolled my pain mangement issues for my migraines and my RA and bone pain into one pain management doctor, who I like very much.  It turns out that he is so much more knowledgeable about which types of medications (both prophylactic, like lyrica, and topamax, [and now we are trying inderol for my migraines] etc) and narcotic, will help with different types of pain for different problems - since he sees a spectrum of people with cancer, people with back pain, people with migraines, RA, etc, that he has been able to give me far superior control than I've had with my neurologists in the past, and he seems good at managing complex pain issues where you have differeing levels of pain from more than one medical issue - I have found that to be so helpful that even if I can get my RA into remission so that I only require medication for my migraines, I probably will stay with him instead of going back to a neurologist.  

Avatar universal
by medicmommy, Aug 03, 2008
alagirl -Just so you know...this label the Dr has stuck to you CAN come back to haunt you for years to come...don't get me wrong, there ARE people who are prescription drug seekers, and get really good at obtaining what they want,  but this can also set you up for misdiagnoses and be detrimental to your health. If you suspect this is happening, get copies of your records and the Dr's notes, and review them. It can become a legal issue over slander if defaming statements are passed on from Dr to Dr, and you can demand the statements be removed from your chart.
I'm glad to see that experience has been a blessing in disguise, and you are doing a bit better..hang in there...One thing at a time...((((((((((((((((((HUGZ))))))))))))                                          ~Melinda

264121 tn?1313033056
by alagirl, Aug 04, 2008
And I don't have a problem with doctors who prescribe narcotics having narcotic agreements, and/or using urine checks, or even blood checks to monitor compliance.  My new guy checked me twice I think early in my tenure with him and hey, he could do it next time I come in and that is well within his policy and his purview and I would be fine with it.  I think that's ok and they have to protect themselves both against addicted patients who are doctor shopping or buying other drugs on the street (prescription and otherwise), and also it can help to make sure the presciption is really being used by the patient and not being sold, and also, that it's not being taken in an addictive type manner (more than one dose at a time, or all of the medication being used at the very beginning of the time period for which it was prescribed) -  I understand they may not be able to do this with PRN medications with migraines, but certainly for things like back pain, and cancer pain, or really for any pain for which the patient is supposed to take their medication at certain intervals daily - like MS Contin), because it should be there in the urine when the patient shows up to the appointment.  

In fact, I think that's the responsible thing for doctors who need to prescribe a lot of narcotics to do to help curb all of these sales of presciptions by people who are just coming in to get them and sell them on the street for money, and to help curb the street addiction of pain medication that it exacerbates.  Because there are very good pain management doctors like the one I have (and that wasn't an accident, I asked around to other doctors so I would get a legitimate, good, doctor), and then there are mills run by doctors who I think just want to make money and don't put enough safeguards into place and MUST know in some instances that their patients are using them to get medications just to sell.  That's another thing I SO appreciate about this guy, he takes as much time as he needs with each patient, even if its thirty or forty five minutes a visit, and he asks a lot of questions about pain levels, quality of pain, how many days in a row, what's hurting, and about any and all other health changes since the past visit, and his nurse does a preview asking the same questions and he STILL goes over everything, just so many questions that A) I think he would know a lot easier if someone was trying to con him to get pills to sell, or for an addiction purpose when they didn't really have an underlying need for chronic pain control and B) It just is one of the things that makes him so much better at actually helping people because he gets such a complete picture of their overall health, and their different types of pain.  And you can tell that he really is in it to help people who hurt, since he spends so long with each patient and can't be making all that much money since it means he sees fewer patients than if he had to run them through in five or ten minutes.  I have seen so many stories from people who go to doctors who let their chronic pain go untreated and its just nice that there are doctors around who really do care about all of these people, certainly some of them with chronic pain issues much more extreme, and who suffer much more than I do, and that they aren't just left with nobody to turn to.

I have talked to him at length also about addiction because I still have some issues in my head I guess about the behavior people who are addicted will exhibit, how they can just be so evil in both their efforts to get drugs, and because since the drugs (or alcohol) deaden them to how much they hurt others, it doesn't seem to bother them to do terrible things to other people in general, even when it isn't a crime for money to buy drugs, just the incidental other horrible things they can do, such as child abuse, rape, assault.  Specifically though because I got raped trying to help an IV drug user, I am still somewhat haunted by how people who are addicted can be so evil, and whether that's part of their addiction, or kind of - which came first, the chicken or the egg.  It still just mystifies me that he could do that to me when I was trying to help him, after specifically asking for my help  - so I just have a lot of questions about addiction, how it happens and why people with addiction seem to be able to hurt others with such impunity (because I had also tried to help a girl last year and I was very good to her, and gave her a job cleaning for me, and helped her with some of her legal issues, and she stole from me).  So I am officially out of the "trying to help people with addiction" business, but its always been my natural inclincation to try to help people who come to me for help, and I now have come to the conclusion that with addiction, people have to commit to getting help on their own and it may need to be largely self-driven, the decision and desire to get better.  

And certainly the other reason I wanted to discuss this with him besides my assault last year was that I was a little resistent at the beginning of my hepc treatment about taking the stronger medication I needed daily for my pain, the MS Contin in particular, which I have been able to dial back a little but do still need daily, and from that aspect also I wanted to discuss it with him because I was reluctant to be prescribed what he thought I needed (and what I did need, but felt afraid about, and guilty about too because my family is against the use of pain medication).  I've never had any problems going off pain meds before after surgeries, and I've been able to take hydrocodone for years for migraines without abusing it (I don't use that now to try to be easier on my liver), but I hadn't ever been on a daily medication for months prior to tx, and also, he wanted to give me migraine medication to use at home that was much stronger to try to cut down on the times I needed to go to the ER - which I was reluctant to do, so even though I've never had addiction issues, I still wanted to talk about it from that aspect as well to get his take on the issue in general, and just if I would be safe using this much strong medication, just to protect myself or gain knowledge I might need.  

I had asked him if he thought addiction was physical or psychological.  His view of addiction is that about 10% of the population is genetically programmed for addiction, and that the other 90% isn't - so that if you aren't in that ten percent you aren't going to become addicted just due to long term therapy with pain medication.  

(I'm not sure I agree with him completely on this, because for instance, with cigarettes it does seem that a high percentage of people who try smoking keep smoking, its difficult to give up).  But anyway, this is his feeling on it.  
I do strongly think there is a genetic component, but I think it may be higher than 10 percent and I also have a theory that different people might be genetically more prone to addiction to certain substances due to overall brain chemistry.  For instance, alcohol might be something that some people are genetically prone to be addicted to, while for someone else, they are genetically prone for addiction to cocaine but not alcohol, and perhaps some people are prone to poly addiction.  Because I have noticed with some of the people that I tried to help (I also worked for Child Protective Services for ten years so in that capacity I worked with hundreds of addicted people) that their addictions were very specific.  Some of them were addicted to meth and crack and although they might take narcotics or barbiturates, that seemed to be more to manage the symptoms of the other drugs, whereas other parents of kids on my caseloads were drinkers, and that was their thing, and others were addicted to narcotic medications, or to xanax, or as I said early, some seemed to be poly abusers, but usually I saw this with younger parents (which led me to believe that might be an experimentation phase where they tried different things before finding which ones really gave them the particular feeling or high they were looking for), and it seemed that people would eventually settle into these strong preferences for one type of drug and that always led me to believe that in the same way that different psychotropic meds work better or worse for some people (you know, like paxil works great for some people, and not at all for others, with others, zoloft works, mao's help some people, sri's help some people better, and you notice that in some cases with ad's especially that not only will different ad's work better for different people but also, that they actually give them side effects that are very different as some people think clearly on one ad that causes others to become very confused, but that in any case, brain chemistry seems to strongly affect which psychotropics will help different patients - which I guess would make it a genetic thing), so I theorized that people had genetic brain chemistry that caused them to be at risk of addiction to certain substances if they tried those substances.  So I find my doctor's view on addiction, with the flat ten percent to be interesting, and I'm not sure I agree entirely, but its interesting and I'm sure he bases his opinion on research and his own observations.

And he was right when he told me I would not have problems with my medications even though one was a daily and both were strong.  When I wanted to go off of MS Contin at one point because I thought I wouldn't need it anymore for pain, I just quit it cold turkey at a point where I had been vomiting for a few days with a migraine and had already started to physically withdraw from it anyway.  It wasn't a blast going through that physical part, but I never had any psychological issues about wanting it or anything and that made me feel much better about it.  I've gone back on it now until I can hopefully get on some methotrexate/whatever combo which I hope will get my RA kind of under control and then I think I may not need it anymore, because I notice that many times I forget to take it (which is one of the other reasons I still had medication even though I shouldn't have had any left when I saw them this time) if I go through a period where I'm not hurting (since I'm no longer having to take RIBA twice a day, I have become a little unregimented and lax about taking my other meds I am supposed to be taking daily, and/or missing one of the doses.  When I was on riba, I was so paranoid about making sure it worked that I was like clockwork with it.  I have got to get myself back to being more consistent with my other meds.

Back to the neurologist.  She had a policy of urine testing also that she could do randomly that she had along with her narcotic agreement, and she never ever once asked me to test in my entire tenure as her patient, EVEN when I told her I had hepc and when she immediately started calling all over town a couple days after that appointment looking, in my view, for a reason to dump me as a patient.  That's another reason I think this was hep-c motivated besides the timing being so obvious.  If she suspected I was violating her narcotics policy why not just have me do a test?  She tested other people there because I saw them hand cups out.  It was so weird.  You could have blown me over when her nurse called me with this mess.  And I told her, hey, this is a mistake.  This fiorcet (or fiornal, I never can remember which is which because I had the generic), has NO narcotic in it, its the type WITHOUT codeine, ask the pharmacy - or call my doctor who prescribed it, he did it that way purposely so I would be compliant with your policy.  And yet, I never got a letter saying, oh we're so sorry, we didn't realize, we checked that out and we're wrong.  Instead, I got a letter the week AFTER that, dismissing me in writing, with the fiornal/fiorcet used as the reason and my doctor said she never called him to ask and since she had ALREADY embarassed me by calling the only pharmacy I've used for years I felt I couldn't be any more humiliated with them than I already was by having a doctor call and basically insinuate she thought I was doing other narcotics, and asking for my records - so I went ahead and told them about the situation, told them I had advised her nurse of the type of fiornal and asked if she had called to clarify and they said no.  My pharmacist also told me she just has a reputation for being difficult and inconsistent, and that this was a blessing in disguise because I'd really be better off with a better neurologist in Huntsville or Birmingham.  Also, she and I had just had that difficulty the appointment before I told her I had hepc where she got very angry with me because I had not yet reported my rape and I came to the apt, told her I'd been raped three days earlier and asked for a number for any type of support in our county, saying I was scared and confused and needed help figuring out what to do.  She literally was venemous and not comforting at all but just angry and asking how could I possibly not have reported this yet and put other people at risk).  And at an earlier apt she was angry with me for being on 400mg of topamax, disagreeing with the dosage.

She said that my psychiatrist must have put me on that high dose and that it was way too much.  I told her that she was the doctor who had me on that dosage and that additionally, she gave me a prescription six months prior to that for 25mg tablets and told me I could titrate up further than 400mg but to be careful due to the risk of kidney stones.  She again became irate, denied doing it, said she would NEVER do anything like that, and it was just very unpleasant. THEN she went further, talking about the medication I DO have through my psychiatrist, the lexapro and the wellbutrin, and told me that I was on WAY too much medication ad wise, and that this needed to be changed, she was just kind of railing - and it didn't make a lot of sense to me, I just didn't understand what set her off.  I must admit to being a little hostile myself at that point and I said basically that while she was free to adjust the medications that she prescribed for me, I found my psychiatrist to be highly competent, that she was well respected, and that I listed all of the medications I was on in order to avoid drug interactions, not because I was inviting adjustment of medications that were prescribed by other physicians for issues outside the purview of the neurological issues for which I was seeking her help.

She had been kind of increasingly terse and tense during appointments since the illness with her daughter (and probably under financial pressure with monthly surgeries at Duke for her and with all of their other children), and just kind of difficult at appts over that past year, but she was the only neurologist in town, and although as she became increasingly kind of difficult and upleasant I had strongly toyed with the idea of switching to a pain management doctor for my migraines, I had been lazy about doing it.  

The funny thing is that when I immediately got a copy of my records from her after she dropped me (without giving me 30 days notice to get another physician either by the way), I found reading through the record the very notes from the appointment where she had upped me to 400mg of topamax, given me the 25mg prescription, and warned me about the kidney stones - just as I had said.  

So given all of that, I look at it as one of those instances where God knew I'd be better off somewhere else, and since I hadn't handled it myself, he was giving me a push.  Because I am so much better off now with far higher quality care and much better pain management (although [sigh] the insurance subsidized botox WAS a nice perk since it helped my headaches a little and kept me wrinkle free at the same time, lol).  But that's the only thing I miss for sure.    

264121 tn?1313033056
by alagirl, Aug 04, 2008
To medicmommy - when I picked my record up, I gave her a notarized affidavit giving her the name and contact information of my attorney and rescinding any and all releases of information I may have formerly given her to either seek or release my records or medical information either verbally or in writing.  I was just picking the records up and hadn't seen them and I gave her that because I thought, wow, God knows what she put in here.

But there was absolutely nothing at all about me violating her narcotic policy in my file - also she put nothing about the hepatitis c, interestingly, or my assault, nothing negative at all in the entire record - I think she did this so she could possibly deny I even told her about it if I ever did take action or file a complaint, because I told her nurse when she called to tell me they were dropping me because of this fiorcet/fiornal/whatever issue to re-check, that it was not a narcotic and that I had difficulty believing that any physician wouldn't have been immediately able to see that this was the medication without the narcotic.  I then said exactly what I thought, which was that they were dropping me because I had just told her that I had hepatitis c and she no longer wanted to treat me due to that.  During most of my tenure with her she knew that I was a broker of food commodities and was financially doing well, so I think she wasn't stupid enough to incur a lawsuit by putting it in my record - she just wanted me ouf of her office, is what I think.

I think she didn't like me personally and our apts had trended towards unpleasant the past year (I only saw her four times a year and she would come in for five minutes, give the shots, give me my meds, and then she was on to the next patient usually, but we'd had unpleasant incidents during some of the appointments more recently, and then certainly the one where I told her I was raped, and then the very next one that I had the hepatitis c and was treating and she found out she'd no longer be able to do the shots, those didn't go well.  I think she didnt like as a patient, but before she was still making several thousand dollars a visit off of me so she tolerated it since it was only four times a year, and I got the botox so I tolerated it.  I think that once she found out that I had hepc and she'd have to see me and manage my chronic migraines which wasn't much  in the way of inurance without the botox, feeling already that I was a diificult patient for her to deal with, without making the big paycheck anymore, I think she just wanted that slot for someone else (her slots were hard to get - that subsidized botox, and trigger injections, and a lot of high dollar treatments brought her a lot of patients and she used them on everyone for everything).  

In general she doesn't deal with a lot of other doctors, I think because she and her husband are a little different socially than most doctors, I think they may be Jehovah's Witness or something similar, he's a big NRA nut, they are anti-choice, which is very unusual in the medical community, and just kind of... different.  They keep to themselves a lot.  I have been to the ER many many times in the past year with my migraines and also with issues related to my hepc, and there was no fallout from her weirdness over there even though she called and pulled my records.  They did my rape kit at the ER and they are just wonderful to me there.

I was up front and I did tell the pain management clinic doctor exactly what had happened with her at my first visit with him, and said that because it happened immediately after I told her I had hepc and because her accusation wasn't true, I felt it was because of bias the hepc coupled with the money but was definitely hepc related, and that it was a very humiliating and rejecting experience for me, but that I wanted to be completely honest with him about why I wasn't with her anymore and I wanted him to have all of the information up front.  

I had the record with me and her letter and the medication log with it showing the medication and the names and contact information of my gp's and said I would not mind at all if he wanted to call my other gp too to ensure that I was giving him all of the correct information.  I was really upset that day because you have to remember I had A) been raped recently and then B) found out I had this disease as a consequence and I felt rejected by this doctor, like she felt I wasn't good enough to treat anymore, or that I was dirty, or unworthy, I don't know.  I think he could tell that I was pretty hurt by just feeling that this medical provider didn't want to see me because of this disease that I was already having difficulty processing emotionally anyway and he was very nice about it and said that it wasn't like patients were going to give providers their disease - and just reassured me that the fact that I had hepatitis c didn't make him think any differently about me as a patient.  He wasn't even interested in seeing her file or getting a copy of it and basically said that he liked to form his own decisions about patients.

I am thinking that my gp who referred me to him may have talked to him about it all before I came in.  He doesn't like that neurologist and had told me for months prior I should transfer to the pain management clinic - when I told him I needed a referral because she dropped me and that I suspected it was the hepc but showed him the letter and the other info, he said she was full of it, it was clearly non narcotic, and that I have never asked him for pain medication in the entire time I have been seeing him.  He said I would be better off with the pain management doctor.  So he may have already told him in the referral what happened, and that he'd investigated it and it was bunk, but for whatever reason, nobody cared why I was no longer seeing her or wanted to see her records.

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by IAmTheWalrus, Aug 04, 2008
I sympathize with your difficulties with the MD. Docs are no different than others, except they have MD degrees. They can be complete idiots and amazing arsewholes, just like any idiot that cuts you off during rush-hour (probably not a great analogy for where you live)!

I, too, have felt stigmatized when revealing my hepc status in some cases. It is really strange how sometimes this stigmatization comes from people in the medical profession, whom you think are educated and should be above prejudice. It is also funny how some of the people to whom you divulge, will be so compassionate and accepting, and mostly just concerned for your health. Many times these people have no understanding of the disease, but are just filled with worthy emotions and good-will. Whereas, the amount of education about the disease may make a person more knowledgeable about hep c, it doesn't seem to change their prejudices. I think these prejudices in many cases just become part of person, or at least their own self perception. I believe they judge others in order to preserve the moral order in their paradigm and to reassure themselves of their own self worth. I guess we all to this in one way or another to some extent.   ....but I digress (and ramble)!

Having a doctor you can trust and have faith in is a real treasure. I'll never take that for granted again. Hope you get the help you need and conquer your illnesses.


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by merryBe, Aug 07, 2008
I agree your doc succked ...but blessing come in weird ways.

my TIAs were cause by my GP overdosing me on tramadol. After going through the windshield my spine got permanently bent
and she had me on 8 a day....and I'd wake up wiith one whole side twitching like no tomorrow.
Now I am down to 1 or 2 pills a day.....and in far better shape all around.

You know, if they think you want the things they won't give you any...and if they know you don't want them, they try to load you's weird....anyway, I'm feeling much better on 2 pills then on 8!!!

I DO THINK for me a lot of water retention is coming from sugar consumption. I can tell a difference in inflammation, AND water within a couple days of indulging.  Funny I never noticed the connection before, but now that I've been sugar free for over a slipping off the wagon really does a number on me. Headaches are terrible too.
It sounds unlikely, but refined sugar really can mess up your chemistry. Just some thoughts. mb

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by alagirl, Aug 08, 2008
I havent had any TIA's since then, and I don't know what caused them but it bothers me that I had all of these things come out positive and she never said anything to me about them.  What I can do now is take these to my doctor and have them repeat the bloodwork she did.  And since I had some issues on the electrocardiogram before I did interferon, I guess I'll go to the heart doctor and get him to repeat one, but instead of getting one done locally I'll get a good one in Birmingham.

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