The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological symptoms.

The primary care physician I’d seen since this past summer managed to grudgingly put in two referrals only to kill them in their crib with her own brand of irresponsible language, a testament to just how damaging defamation in one’s previous medical records can be. Once she’d insisted on having Emory’s chart and I (against my better judgement) gave her a release it went downhill from there.

Ironically, though she appeared very naiive about the very real possibility that such written material could seriously hurt my chances of my condition being taken seriously, and could potentially make obtaining the testing and treatment I need impossible, she went on to chart statements I didn’t say, ones that were taken out of context, and some that I had said but painted those in a way that made it clear to the reader that she didn’t believe I’d in fact been sabotaged.

I only discovered this after she’d insisted I see another neurologist as my near syncope flaired up and so did the neuromuscular symptoms.

Despite my being leery of seeing yet another general neurologist locally I bit the bullet and forged ahead, making an appointment with a female neurologist in Gainesville who appeared (at least on the surface) to be more compassionate than the average. Dr. P and her nurse sent over the clinical notes from her office to the neurologist’s, and I was asked to send the records from Emory.

Since I had a copy of my own (which was very jumbled the way Emory’s medical records department had copied it), I tried my best to organize it, copy and fax only the test results and Dr. V’s last note which reflected the plan she and I were in agreement on (which was for me to get these out of town evaluations).

It included none of the unprofessional BS, but when I discovered just a few days before Christmas that Dr. P (the primary care doctor) was refusing to fill out the form so I could get to the University of Florida Movement Disorder Clinic for that appointment on January 4th (which already had to be rescheduled once before because of Emory’s sabotage) I was doubly disheartened, but made a last ditch effort to call and see whether it could be pulled out of the fire by the new neurologist I hadn’t yet seen.

It was a longshot since I couldn’t obtain an appointment with her until February, but it was the only shot I had to save myself another 6 month wait (that makes a full year now waiting for that evaluation with the movement disorder specialist).

In addition to more near fainting spells and other dysautonomic dysregulation such as uncontrollable mucus flow when sitting up, strange itchy, blotchy raised rashes on the left side of my face, GI problems, temperature dysregulation, those narcolepsy-type episodes returning, and worsening fatigue, the myoclonus has steadily crept up on me over the past few months even while wide awake, the fasciculations in my toes have returned on and off as well as the muscle stiffness in my thighs, butt, calfs, and lately even in my jaw and neck (and so clearly I really needed that appointment)!

When I called the new neurologist’s office Dr. S.B to ask if she’d fill out the form for the non-profit that would cover my travel expenses so that I wouldn’t miss this appointment again, I received quite a different reception from her two nurses than I had when I’d first set up the February appointment and spoken to one of them about my situation.

The first time they’d sounded very caring and empathetic, but there was a new edge in their voices this time and they seemed guarded, though I did not know why. I was met with a considerable amount of resistance right out of the gate in this second phone conversation and the first nurse told me that the doctor had told her to tell me that she didn’t feel there was “anything more she could do” for me, that I’d had “all this work-up at Emory and elsewhere, that I’d “seen numerous specialists”, and that “based on your medical records” she didn’t want to “waste” my “time.” She went on to say that the doctor “tends to agree with the records”(what a peach).

I was not aware that any conclusions had been drawn in my records. There was nothing I knew of but inconclusive raw data from Emory, and in fact some evidence of the Dysautonomia in my hospital record from Piedmont.

I told this nurse I had not had “all this work-up” nor had I seen “numerous specialists”, at least not in neurology, as I had only seen a few general neurologists a couple of times and I asked exactly what records she was referring to (knowing that Piedmont doesn’t allow their doctors to send out other facilities’ records and that the subjective, defamatory stuff from Emory was not included in what I’d faxed them).

The nurse then read me two entries. To my horror, they were both from Piedmont (Dr. P’s notes). They were written in an annoyed, complaining tone, one stating “We’ve asked for Emory’s records numerous times”, to which I called “Bullshit! I gave them a full release! They told me they have them months ago. I don’t know what all they sent them, but that’s not my problem if they didn’t send everything. Who wrote that?”

and the other, a misquote, stated “has been seen at Vanderbilt” and “Vanderbilt discredited me.”

“That doesn’t even make logical sense” I said to her. “Why would Vanderbilt discredit me if I haven’t ever seen them? I sure didn’t say that and I doubt seriously Vanderbilt did. That was Emory. I’m still waiting to hear back from Vanderbilt. They’re still reviewing the application and records that they were sent. They haven’t said yes or no yet as to whether they’re going to give me an appointment. Besides, I will need the same form filled out for the travel there as I do for University of Florida, so why would I be calling and asking Dr. S.B. to fill out that form if I was going to say something like that? Come on! Why on earth would I tank my own referral? I’m in favor of it!”

“It says here Vanderbilt” the nurse insisted emphatically as though it must be true if somebody had written it down in their notes.

“I’m telling you, that is incorrect! Besides, Dr. S.B hasn’t even seen me yet herself so why on earth would she already give up on me before she’s ever seen me even one time based on some records? I can’t understand why anyone from Piedmont would write that stuff either because the doctor there was the one who had her nurse call me back and tell me she wanted me to see a neurologist. She felt very strongly about it because my symptoms have gotten worse.” 

At this point the nurse at the neurologist’s office sounded like a broken record. There was no getting through to her. She wasn’t using her head. She then gave the phone to a second nurse who spoke to me in a similar clipped, defensive, and guarded tone as though I posed some sort of threat. I had the eery feeling they weren’t telling me the whole story but was at a loss as to what to do or say next. The only thing I knew was that whatever wrong impressions they’d been left with had pretty much nullified whatever potential good could have come from that referral and it was clear they thought badly of me. The second nurse went on to reiterate what the first had said to me.

“Who wrote that?” I asked. “Can you read me the name?”

“There are several names here” she answered.

“Read them to me.” I replied.

The second nurse grew colder; “I’m not going to read them to you. You’ll have to ask them.” she answered in a controlling tone.

” I plan on it, but I need to know who they are so I can ask them. Was it the nurse? The doctor? Both? Several nurses? Secretaries? Who? And why would they write something like that when it was the doctor there who initiated this referral to a neurologist? She wanted me to go.”

“Look” she said nastily, cutting into my sentence, talking over me and rushing up her cadence, “I have other patients to get to. I’m not going to read you those names. I’m going to hang up the phone” she threatened when I wouldn’t just yield and let her mow me down with her aggressive overtalk. “You can do whatever you want with the appointment, keep it or cancel it, but I’m just telling you she said there’s nothing more she can do for you and she can’t fill out that form. Besides, she would have to have all Emory’s records, not just bits and pieces.”

“That was not just bits and pieces. It was 1 inch thick and it took me forever to organize all that stuff because the way it was copied before it was sent to me, the pages were all out of order, and I faxed your office about an inch of papers and was told that was enough! I was at Emory for 13 years. Whichever nurse I spoke with told me the first time I called that she only needed the last 6 months. Do you really want all 13 years of records? It took me forever just to obtain 2 years worth, and I still don’t have the tapes of my sleep studies. That’s not my fault if they don’t send everything I requested. Besides if she is just going to do maintenence and no further investigation what’s the point? She’s already made up her mind she can’t help me before she tries.She’s starting out with a negative outlook before she’s even met me! Really there’s no point in coming 50 miles to see a doctor who has given up on me before ever laying eyes on me, so go ahead and cancel it. I thought she was better than that.”

By the time I got off the phone with nurse number 2 I was livid. I called to try to get ahold of someone at Dr. P’s office and ended up getting her main nurse’s voicemail (as usual. Sometimes my call isn’t returned for weeks). I finally reached a live person in the call center and said I needed to make an appointment with Dr. P to clean up this mess and say goodbye, that this was not helping me, and I need to come by, pick up my notes, and nip this in the bud before it gets any worse. I made an appointment and asked her to let them know I needed my notes, all of them, at the front desk ready for me when I arrived.

I’d only seen her about 3 or 4 times, but I’d seen enough. It was already bad enough what I’d been through with Emory and I came to her as a medical refugee wanting to leave those caustic records in the past only to discover she wasn’t much better; that she wanted gratuitously to dredge the shit back out of the toilet and stick it in my luggage to stink for eternity.

I thought back to the day she’d twisted my arm, making the referral to Vanderbilt contingent upon releasing Emory’s records to her. “You need to trust me” she’d said as I was almost in tears from the realization that this could go on forever and not being able to take much more. Trust her, my ass! At this rate I would never trust another doctor again! It is that moment when you go to that one whom is supposed to protect you from the monster and suddenly you realize they are the monster; only in a different form. Her vampire fangs were showing wthout a doubt, even if only a little that day. It was the same day she’d waived the form from Vanderbilt in front of her face and told me that she could have said “No, I’m not going to fill it out” if she didn’t care… Somehow that display of arrogance conveyed anything but caring and only served to make the hairs stand up on the back of my neck. It was a show of force, and I read it correctly. My perception is razor sharp and sometimes it’s a curse. I may be an Aspie but I pick up on body language better than most.

The day came for me to walk in there for the last time. The front desk clerks didn’t have my clinical notes, and a man behind the counter told me that they don’t have access to those in the front but that a nurse could print it out in the back once I was brought into one of the examining rooms. S, the nurse whom almost never returned my phone calls as long as I’d been coming to that practice entered the room where myself and my personal assistant were waiting, took  my vital signs, then entered my symptoms into the computer.

Somehow I got the feeling she wasn’t really listening, just going through the motions, and had no plans to do anything about them. It seemed pointless to tell her. She pretended to do her job but her facade was paper thin.

She took my vital signs, commented that my blood pressure was slightly better that day, then took my temperature and commented that it was 99.4 which was not a surprise to me, as I had been overheating alot lately, interspersed with getting chilled on and off throughout the day and night.

I asked her then to print out the notes. At first she tried to get out of it by saying I’d have to get them from the Medical records department, but when I told her that the man at the front desk had told me she could print them in the back she relented and left the room to go get them.

Meanwhile the office manager came in, shook my hand and sat down and I recounted what the neurologist’s nurses had said to me on the phone of what had been sent of the clinical notes and told her that I wanted to look them over and make sure there were no more inaccuracies and ask whom had written them and have any I found corrected and that I hoped those two were all of them.

She appeared to agree with me that such statements were only shooting me and the referrals in the foot. I don’t know for sure if it was genuine or not, but she seemed amiable, and told me that the rigid corporate structure was a big part of the problem as to why everything I needed was a sticking point to them, and she said I’d probably be better off with a small doctor’s practice and that she’d help me find one. That almost sounded too good to be true that she’d really do that for me.

The nurse returned with the clinical notes in hand. There were 3 or 4 of them; two or 3 pages each. I just barely skimmed them and found several more inaccuracies right away, and though I didn’t have time to read the whole thing I read enough to get the general sense that there was quite a bit of slant and spin in the interpretation (not a good thing considering that this doctor and I had just barely gotten started). If she really wanted me to trust her this was definitely not the way to go about it! At first I thought the material was charted by the nurse but then apon closer inspection I saw the doctor’s name at the end of the entries.

I asked the nurse if the doctor was coming in to speak with me, and she said “No, she doesn’t need to come in here.” It reminded me a little of when I’d been to Dr. T’s office at Emory when their office manager seemed to be “protecting the Queen” and I never did end up seeing the doctor, only this time it was more the nurse doing it.

I suspect that the doctor at Piedmont was afraid to face me, embarrassed at what she had written and in contrast just how little she’d done to help me in that period of about 6 months. In actuality anything she had done she’d erased with all her back-tracking in the records; such a waste when you consider she could have facilitated at least two or 3 referrals if she had genuinely been solidly behind me, but it was becoming increasingly clear she wasn’t and that anything she did do was done grudgingly and with much protest, then dashed to the rocks before I had a chance to feel any sense of security or hope for the future.

They drew liver enzymes and refilled my prescriptions (only because I was conscientious enough to ask), and the office manager came in while my blood was being drawn and gave me her card, telling me she would give me a call on Tuesday (supposedly Tuesday a week ago; but upon closer inspection her card said this Tuesday) to go over the records and what needed to be corrected. Well she didn’t call me on either Tuesday.

At least they seemed more reasonable than Emory, or maybe it was all an act to get me out of there and then the phone would ring eldlessly and voicemail would pick up once I got home and tried to reach someone again (as was usually the case).

I and my assistant walked out of there with the surreal sense that it had all been an illusion. Perhaps they had just handled it less adversarially than Emory had in their stalling and waiting until I left of my own accord knowing invariably I would when it became painfully obvious that they intended to do nothing for me and of course that couldn’t go on forever, as I’ve been worsening, and so staying someplace where my condition was allowed to deteriorate indefinitely was not conducive to survival and I did not want to wait until it landed me in the emergency room again.

When I returned home that day and read the rest of the notes I was really floored. It seemed as though Dr. P. was hinting at early stage dementia without coming right out and stating what she was thinking. She did not think I was faking, but her line of thinking and the way she handled it wasn’t good either, as rather than just saying this to me she seemed to be trying to punt me over to neurologists, maybe thinking that they would present the same hypothesis to my face that she’d been quietly ruminating about behind my back, and save her the “difficult conversation”.

She threw some terms around albeit different and less judgmental ones than the people at Emory did, but she still objectified me in her own way, looking past my words and in some instances taking them out of context; all the while still failing to view me as a human being with legitimate fears and concerns like anyone else.

Most ironic of all, she doubted that Emory had sabotaged me and viewed that as paranoid, and my momentary sadness at the records being brought up by each new doctor I encountered she misinterpreted as depression or anxiety, yet in the same note and in the same breath she did her own form of sabotage in that she made me look so hopeless that it convinced a neurologist she’d wanted me to see that there was nothing she could do for me. How she could be so blind to that insight is beyond me.

Had she asked to see the letters I’d have gladly showed them to her so that she could see for herself that this was real; that I had really been kicked out, and they had in fact destroyed all my doctor/patient relationships, and they had prevented me from making it to Cleveland Clinic and the UF movement disorders clinic; it was not merely a figment of a decaying mind.

If her plan was for me to see a neurologist so they could assess me for something like dementia her strategy failed miserably. I left without her ever having to have that conversation, but how did any of that help me? And what if I were developing dementia? Without a doctor how would I or anybody else know and take action. There are medications for that, if not a cure, at least to slow the progression of it. Isn’t one supposed to start that sooner than later for the best outcome?

Did she just figure that no real harm could be done by doing nothing since something like that is incurable anyway and what would be the point?

Or did she assume that once I started really showing the effects that I’d eventually come to the attention of some doctor who would identify it, that it would become evident soon enough, and that all’s well that ends well?

If that is what she was thinking she’s not getting the picture that every time I have one of these experiences with a doctor I trust doctors less and less and I’m getting to the point that I won’t like or trust any of them again and that increasingly I am going off to lick my wounds, dragging my body away alone to die like a wild animal in the woods.

The distrust I have is not paranoia by any definition. It is real with real basis in fact, and any “anxiety” I might have is not “generalized” by any means. It is quite specific (but of course she didn’t finish the sentences in her narrative so that the reader would know that what I’m experiencing is genuine and understandable and completely rational. It is a product of the human condition, not some free-floating nebulous fear, but a very real reaction to what has happened to me and is still happening. If she’d finished them then it would be clear that there is nothing vague about any of this. Any feelings I have are about very specific life events.

I’d commented at one appointment a few months ago when she’d refused to treat my Dysautonomia and the underlying condition causing it that if she places me in that double-bind in which she refuses to treat me herself, yet won’t facilitate the referrals so those more skilled can properly diagnose and treat me then she might as well just refer me to hospice because allowing me to suffer is not acceptable. This is no better than what my former GP at Emory was doing in those months leading up to the complete involuntary dismissal and official denial of care.

When I read the record written by Dr. P. I discovered that this statement was twisted and painted as depression and that only the part saying she “should just refer me to hospice” was quoted; not the rest of thaat sentence which stated “if you’re neither willing to treat my condition nor get me to someone who will/can.” Taken out of context it leaves the reader to think I’ve said this for no rational reason and was made out of some free-floating melancholy. It is patently misleading, as I do not want to die! 

My wish right now is to have my condition(s) diagnosed and treated. I am all for a patient’s right to die with dignity, but I am not at the stage where I want to stop these measures right now, and nobody has the right to end diagnostic testing and treatment unless and until I choose that! 

This doctor has had the audacity on several occasions to say she doesn’t “feel comfortable” doing this or that to help me in this regard, but this should not be about her comfort, but about mine, and she’s getting paid to put my interests first. End of story! If she’s that selfish she needs to find another line of work. Nobody likes every part of their job description but they have to do it anyway, and a large part of a primary care physician’s job is facilitating referrals and coordinating care. She is not doing her job, and that’s not OK.

She made references to having to “redirect me” many times, and my short-term memory being impaired. Maybe so, but that doesn’t negate the fact that my experiences over the past year are very real and whatever deficits in short-term memory I may or may not have do not make me imagine things. My memory for life events is quite clear and accurate.

I do not need to be “redirected”. I need to have my condition diagnosed and treated and my priorities and my plan for my body taken seriously and acted upon.

Rather than sneaking around and writing cryptic insinuations in my chart maybe she should have just asked me about my short-term memory or said that she was wondering about that possibility, and partnering with me to rule it in or out.

Even if that bears out to be the case that something is wrong in that category of disease I am not so gone that it warrants going above my head and behind my back. I am not incapable of understanding such concepts. I’m an intelligent woman and well-read, well-educated. It seems she thinks I have the mental capacity of an onion. How insulting!

Don’t I deserve a doctor who talks to me as if I have a brain and treats me with real dignity? When all is said and done I am sitting here with a fist full of nothing, and I have no medical back-up now at all. Whatever this thing is that is attacking my body/brain it’s only getting worse.

The myoclonus has gotten significantly more violent and although it’s not continuous all day and night and the Keppra still helps, it has taken up more time each day than it used to and now it is happening while I’m doing activities in the daytime and sometimes I jerk so hard my muscles ache and it feels as if my head is going to crack off my neck. Sometimes it happens several times in a row, almost like a seizure.

I’ve also noticed that typing on the computer has become more and more difficult. I am making more typos, partly because my fine motor function is impaired but also I’m missing where the keys are. Soon I will need to get a voice activated program to replace typing, as this is taking more and more effort and time.

If only doctors were to invest as much time in trying to help coordinate care as they do in dodging and trying to avoid the very work that they’re supposed to be providing in a human service industry patients would get the help they need alot sooner.

I get it that these big healthcare corporations place demands and constraints on these doctors that they might not even admit to us patients, but they are for the most part in a much better position than we are to stand up and speak up when they see things improper going on at their workplace than the patients are and they should just start looking for another job instead of going along with a corrupt system and throwing their patients under the bus just to cover their own ass. It is a known fact that there’s a very high suicide rate among doctors and this is in large part because they are pressured to do things that are unethical and ultimately it catches up with them (if they have a conscience).