Jump to content
ACN Latitudes Forums

Guess who has her medical records? :D


Recommended Posts

Got all of my medical records from one hospital today. Still have a couple other doctors to go to though.

 

They went back to my first hospitalization at four years old, & you better believe that I read every single paper in that folder, hahah.

Some things I noticed...

 

~ ALL of my heart workups are titled "Abnormal EKG" (December 14th, 2006) & say "Borderline Prolonged QT, may be secondary to QRS abnormality". He even told me himself that it didn't come back normal. He wrote multiple times about me complaining of heart troubles & dizzines & I've had a murmur since I was a child.. But was that ever looked into? No. It also says in no uncertain terms on my heart workups NOT to prescribe me "QT prolonging" medication. I looked up some lists of medications that fall in this category & I just don't have the time or patience to search through them or just search all of the medications that I've taken, but I saw more than a few sleeping medications & it's hard to imagine having taken so many sleeping meds for years without having at least one mentioned on there. Also, WE were the ones to mention P.A.N.D.A.S. & he was the one to shoot it down. Not because it didn't fit me, but just because he didn't believe in it. Why didn't he ever mention that heart problems weren't a symptom of the Tourette's he thought that I had & the P.A.N.D.A.S. that I thought I had? Why did that just get pushed under the rug?

 

~ More than once, he mentions Dystonia & Dystonic posture. He literally never once mentioned those to me. Not a single time. I've been made fun of for my horrible back (& particularly shoulder) posture since I had my symptom explosion. The explanation that I offered up to him, as well as everyone who called me Hunchback (especially my Mom who kept trying to tell me to put my shoulders back & didn't believe that I COULDN'T), was that my twitches had messed up my muscles. Granted, that was complete speculation & just something I figured in my head, but OH. MY. GOD. I just looked up Dystonia for the first time, & why was this never brought to MY attention? I always wondered why I never heard of another kid with twitches, & just could NOT roll their shoulders back or stand up straight. Whenever people asked me why I did it I seriously said that it felt like the twitches had just contracted my shoulders. I said those exact words to this doctor. & he wrote down that I had Dystonic Posture, but never told me or my family..

As with the heart problems, he also failed to mention that muscle pain/problems weren't a symptom of either of the diagnoses we were considering no matter how many times I mentioned it. Obviously I know this now, but I was eleven years old when I first found myself in his office. I trusted him as a doctor & I had no reason to research because, well, at that age I still believed that doctors wanted nothing more than for their patients to feel better. WHY were these symptoms just blown off?? & more importantly, how could he write "Displays Distonic posture" "Has Dystonic posture" & "indicative of Dystonia", & never ever so much as mention it to me??

 

~ I'm sorry that I can't provide the exact dates for these, but I'm trying to keep the papers in order & I really just don't feel like flipping through all of those, especially when half of them look the exact same.. But. in 2007 he ruled out a Tourette's Diagnosis because my twitches subsided for three months. (Might I also add that after that was thrown out, not a single other diagnosis was achieved or even avidly pursued, but he continued to treat me for about two years with NO diagnoses or even possible explanations). On December 16, 2009, my EEG writeup says the words "Emerson carries a Tourette's Syndrome diagnosis". Really? I do? Because correct me if I'm wrong here, but I'm PRETTY POSITIVE that you said "You do not have Tourette's" to me. & since that day my tics have only gotten less noticeable & more manageable, with the exception of a few spikes.

 

~ The EEG was to check for sleeping seizures. I pretty much told him that the test was useless the second he proposed it because when I lived with my bestfriend, which was last summer, we shared a bed every single night. I'm fairly confident that if I was having seizures in my sleep, she would have noticed. But he trudged on & I just decided that the test couldn't hurt anything. First off, it was a test to check for sleeping seizures... but he didn't schedule me an overnight EEG. Instead he made me stay up for fortyeight hours & then come in at nine AM for one. I'm no doctor & I don't know much of anything about EEG's, but that just doesn't seem right to me. Dr. G agreed with me when I told him about it. Much to their surprise, as well as my own, I couldn't fall asleep when we got there, but they did the EEG anyway. When Dr. R talked to me about the results, he just said that they were "highly abnormal" & that I needed to come in for more testing. He never trusted me enough to even so much as hint as what he thought was going on. We had to jump through hoops just to figure out that it was my QT that was messed up.

My Dad has horrible mixed sleep apnea & Narcolepsy. Just wanted to throw that in. Anyway. After the EEG, my Dad lost his job, & I lost my insurance. Once we regained it a few months later I had already vowed to never see this doctor again & my symptoms had improved, so it was just never looked into. I'm having trouble reading this one, but the part that I THINK is referring to the abnormalities says "During this study, there are rare left parietemporal (P3/P7 maximum) sharp waves. There is no asymmetry or frequency or amplitude seen.... This is an abnormal routine EEG for age & state secondary to the presence of rare left parietemporal sharp waves. These findings are consistent with a focal area of epileptogenesis within that region." It also goes onto say that no seizures were captured. Can someone PLEASE explain that?? I have the actual results too, if that helps.

The "Electroencephalogram Diagnosis" was "Abnormal secondary to rare left parietotemporal (P3/P7 maximum) sharp waves".

 

~ I was told I had P.A.N.D.A.S. by a psychologist about a year after beginning to see this neurologist. Even after mentioning this to him, my ASO titers were ran ONCE & my AntiDnase-B titers were never run. Just completely forget P.A.N.D.A.S. for a minute, my pediatrician was the one to notice that I got strep "more than anyone [she] had ever seen" BEFORE my symptom explosion. When people asked us how often I got strep, we seriously just told them "Always", because literally every single time I went to the doctor, she just tested me for strep because we really never knew. & literally every single time she did this, I was positive. Specifically for GABHs levels, one instance of which WHILE I WAS SEEING THIS NEUROLOGIST she described as "the highest infection" that she had ever seen. WHY, if you're treating a child with this kind of strep history, would you not only not consider it to be a factor, but go so far as to only run their ASO titers once? On that note, MY ASO WAS POSITIVE. These read a little weird, it says "Positive H 100-199 H"? I've looked it up & down but that's really what it says. I've never seen an ASO expressed as an interval? This was also run in 2006, BEFORE I mentioned P.A.N.D.A.S. So apparently he just never bothered running my ASO titers when I brought it up, despite the stack of positives at my pediatrician.

 

~ I was never once tested for Lyme Disease. I was never once even asked if I had been bitten by a tick. When I say "symptom explosion" I'm referring to when I woke up one day in the sixth grade with debilitating twitches, uncontrollable OCD, & horrible anxiety. It was only when these popped up that everyone in my family seemed to be able to recall minor twitches from as far back as four. I had been dealing with OCD & anxiety since I can remember, but until that point they were manageable. I simply refuse to accept the notion that this explosion just so happened to come about less than a year after I was bitten by that tick. My muscle pain, joint pain, & heart problems came about a little after the initial symptom explosion, they were NOT around before the tick bite. Once again, nowadays I would have done my research, come across Lyme Disease, & asked about it, but at the time why would I have thought that a simple tick bite a year prior could be the cause of all that? With symptoms that aren't covered by P.A.N.D.A.S. & especially not Tourette's, why was Lyme never considered or brought up? Eleven year olds are not supposed to have radiating joint pain & muscle pain so bad that they can't lift their arm above their head some days.

The number one question I have after reading all of these papers is WHY WERE SO MANY SYMPTOMS IGNORED? WHY was I treated for (& apparently still hold a diagnosis of) Tourette's & then effectively Nothing-At-All Syndrome for years with this mountain of other symptoms? Tourette's does not even BEGIN to explain my OCD, muscle pain, joint pain, heart problems, sleeping issues (Insomnia then Narcolepsy), anxiety, depersonalization, sleep paralysis, hypnagogic hallucinations, BRAINFOG BRAINFOG BRAINFOG, a myriad of emotional/psychiatric issues, or ANYTHING ELSE.

Why was I left in the dark??

 

Please respond. I am lost & angry right now & I don't even know what to do at this point.

Edited by EmersonAilidh
Link to comment
Share on other sites

The number one question I have after reading all of these papers is WHY WERE SO MANY SYMPTOMS IGNORED? WHY was I treated for (& apparently still hold a diagnosis of) Tourette's & then effectively Nothing-At-All Syndrome for years with this mountain of other symptoms? Tourette's does not even BEGIN to explain my OCD, muscle pain, joint pain, heart problems, sleeping issues (Insomnia then Narcolepsy), anxiety, depersonalization, sleep paralysis, hypnagogic hallucinations, BRAINFOG BRAINFOG BRAINFOG, a myriad of emotional/psychiatric issues, or ANYTHING ELSE.

Why was I left in the dark??

 

Oh, EA... this truly sucks. And you've asked the question that haunts every parent on this forum. My son had symptoms very similar to yours: started with migratory joint pain, muscle weakness, difficulty walking a few weeks after a high fever (104). Those can certainly align with Lyme, but they're also pretty classic symptoms of acute rheumatic fever. Six weeks later, our son's seizure-like chorea episodes began (exactly the latency described for Sydenham's chorea). To us laypeople, it seems like any doc with common sense would connect some dots and say "wow, that fever must have something to do with the emergence of all of these strange symptoms."

 

Like your experience, our local specialists discounted the symptoms (ongoing fever spikes, elevated ANA and RF, elevated ASO) that didn't fit their comfort-zone diagnosis. And - like you - we had the psychologists telling us "this isn't primarily a psychiatric problem, you need to see a neurologist" and the neurologists dismissing that with "it's a psychogenic movement disorder... or OCD... or Tourette's... but it's not medical." (Not medical? Mental illness is still "medical" anyway, isn't it?)

 

So why do respected medical specialists ignore what seem like blatant clues and refuse to see what appears obvious to us poor patients? I don't know. Are they so specialized that they can't process info that doesn't clearly fit inside their narrow diagnostic boundaries? Are they afraid of making a mistake on "edge cases" that cross disciplines, so they refer these cases elsewhere? Are they afraid of litigation if they step outside their "specialty box"?

 

Wish I understood why this happens, so I could gain insight into how best to approach a new doc in a way that maximizes the chances that they will actually help my son. Wish I could share that secret with everybody on here. It's so depressing to wait months for a specialist appointment, only to realize in the first 5 minutes that they're not going to offer anything except another referral.

 

Thank goodness for the heroes like Dr. K, L, T, B, C, and all those other letters. They're willing to listen, to learn new lessons from each patient, and to try new treatments if the old ones aren't working. Without them, I don't know if I'd have any faith left in our healthcare system.

 

Now that you have those records, you're armed with fresh ammo! The heart issue you mentioned could certainly fit into the post-strep ARF/SC/PANDAS spectrum, or some other nasty PITAND pathogen, as could the other issues documented in your case history. Knowledge is power, and I have no doubt you can use this power to get some answers!!!

Link to comment
Share on other sites

Oh Emerson! That is truly unbelievable! ALL those symptoms, all those indicators, and nobody to pay attention or listen!

 

Why were you left in the dark? As hard as it probably is to hear it, my guess is, because you were/are "a child." Unfortunately, when it comes to medical issues, emotional and intellectual maturity don't count for much. Have you asked your mom if she recalls any of these issues or "diagnoses" (or lack thereof!)?! :blink:

 

But like WorriedDad has already so aptly said: Knowledge is power! Now you have this incredible history in your hand, no one can blow you off again! This is delayed victory!

 

Now go for it! Use that anger and frustration and the energy it stirs up and move forward, toward health! We'll all cheer you on! :wub::)

Edited by MomWithOCDSon
Link to comment
Share on other sites

I looked up Eleptogenesis, & I am just sitting here in complete shock & bewilderment.

That test seems to say that I was in the process of developing Epilepsy. Even if you want to take the phrase "This is conclusive of" with a grain of optimistic salt, I HAVE SEEN HIM SINCE THEN. I just found a paper from one very last general followup appointment on May 24th of this year. & he never even mentioned it to me. Never once so much as brought it up. Even if I'm seen as a child, the fact that a test showed that I'm developing Epilepsy is something my parents should have been told over the phone as soon as they saw it. If I had been told that instead of "Your results were abnormal" over & over when asked why, you bet your a## I would have been back up there. He didn't even stress it. When we said that we couldn't do more testing, he was peachy with that. Something like that should NOT have been dropped, but I really just cannot get over the fact that I HAVE SEEN HIM SINCE THEN. I understand a doctor not discussing a lot of things with patients as young as me, but my parents (Mom, stepdad, & Dad) were never informed of any of the things that I have discovered were kept from me today.

 

Besides that, the Dystonia sticks out to me. Not only did I complain about muscle tension, pain, & even USE THE ACTUAL WORD "CONTRACTION" multiple times, but he has it written down. Not only does he have that written down, but he goes so far as to say "Has Dystonic posture" more than once. I didn't even know what the word was when I saw it, I had to google it & I seriously started shaking when I realized that he, FOR WHATEVER REASON, wrote down the answer for my excruciating shoulder pain/inability to roll them back/horrible posture, but didn't ever tell me, my Mom, my stepdad, or anyone else. I just do not understand that. Not so much as a "Well, we might look into Dystonia" or anything of the sort. He wrote about my muscle pain, SPECIFICALLY the pain in my shoulders which was unique & so much more painful than any other area, for years. It is mentioned over & over, & it contains the word Dystonic more than once. Even if he didn't want to tell a young patient like me, why was NO ONE told?

Edited by EmersonAilidh
Link to comment
Share on other sites

I think it's because they think that "nothing can be done" and they don't want to throw out "big words" to scare patients or prompt them to ask questions that they have no answers to. A doctor says, "distonia" and the patient freaks out or parent freaks out. Most people go to doctors wanting cures, symptoms relieved, and then to put blind faith in the dr that he will wave his magic prescribing wand over them and all is well and good again. Those of us who actually have brains in our heads and want to delve into the hows and whys and labels and causes... well, that is just too much trouble for a 5 or 10 minute session, now isn't it? And we say we don't want to take the meds because we want to know the root cause before we cover it up with chemicals? Ha!

 

You aren't alone in this, and that is the best comfort I have. I'm glad you actually have the records in hand and that you are still as young as you are, even though I know you must feel 90 sometimes- I certainly did at your age. :(

Link to comment
Share on other sites

I looked up Eleptogenesis, & I am just sitting here in complete shock & bewilderment.

That test seems to say that I was in the process of developing Epilepsy. Even if you want to take the phrase "This is conclusive of" with a grain of optimistic salt, I HAVE SEEN HIM SINCE THEN. I just found a paper from one very last general followup appointment on May 24th of this year. & he never even mentioned it to me. Never once so much as brought it up. Even if I'm seen as a child, the fact that a test showed that I'm developing Epilepsy is something my parents should have been told over the phone as soon as they saw it. If I had been told that instead of "Your results were abnormal" over & over when asked why, you bet your a## I would have been back up there. He didn't even stress it. When we said that we couldn't do more testing, he was peachy with that. Something like that should NOT have been dropped, but I really just cannot get over the fact that I HAVE SEEN HIM SINCE THEN. I understand a doctor not discussing a lot of things with patients as young as me, but my parents (Mom, stepdad, & Dad) were never informed of any of the things that I have discovered were kept from me today.

 

Besides that, the Dystonia sticks out to me. Not only did I complain about muscle tension, pain, & even USE THE ACTUAL WORD "CONTRACTION" multiple times, but he has it written down. Not only does he have that written down, but he goes so far as to say "Has Dystonic posture" more than once. I didn't even know what the word was when I saw it, I had to google it & I seriously started shaking when I realized that he, FOR WHATEVER REASON, wrote down the answer for my excruciating shoulder pain/inability to roll them back/horrible posture, but didn't ever tell me, my Mom, my stepdad, or anyone else. I just do not understand that. Not so much as a "Well, we might look into Dystonia" or anything of the sort. He wrote about my muscle pain, SPECIFICALLY the pain in my shoulders which was unique & so much more painful than any other area, for years. It is mentioned over & over, & it contains the word Dystonic more than once. Even if he didn't want to tell a young patient like me, why was NO ONE told?

The only thing you can do now, Emerson, is move forward. We all can get caught up and angry - and you have every right for sure - but it will not help you. You have proven to be a strong person, now take what you know and get well. WHEN you are well, you will be an advocate for others and help people like you needed help years ago. You already are helping people. You helped me with all your responses and then some.

 

This is unbelievable that medical professionals made such errors in judgement. I am sorry for the pain you are feeling now but I hope you feel will stronger tomorrow and the next day and the next.

Link to comment
Share on other sites

Got all of my medical records from one hospital today. Still have a couple other doctors to go to though.

 

They went back to my first hospitalization at four years old, & you better believe that I read every single paper in that folder, hahah.

Some things I noticed...

 

~ ALL of my heart workups are titled "Abnormal EKG" (December 14th, 2006) & say "Borderline Prolonged QT, may be secondary to QRS abnormality". He even told me himself that it didn't come back normal. He wrote multiple times about me complaining of heart troubles & dizzines & I've had a murmur since I was a child.. But was that ever looked into? No. It also says in no uncertain terms on my heart workups NOT to prescribe me "QT prolonging" medication. I looked up some lists of medications that fall in this category & I just don't have the time or patience to search through them or just search all of the medications that I've taken, but I saw more than a few sleeping medications & it's hard to imagine having taken so many sleeping meds for years without having at least one mentioned on there. Also, WE were the ones to mention P.A.N.D.A.S. & he was the one to shoot it down. Not because it didn't fit me, but just because he didn't believe in it. Why didn't he ever mention that heart problems weren't a symptom of the Tourette's he thought that I had & the P.A.N.D.A.S. that I thought I had? Why did that just get pushed under the rug?

 

~ More than once, he mentions Dystonia & Dystonic posture. He literally never once mentioned those to me. Not a single time. I've been made fun of for my horrible back (& particularly shoulder) posture since I had my symptom explosion. The explanation that I offered up to him, as well as everyone who called me Hunchback (especially my Mom who kept trying to tell me to put my shoulders back & didn't believe that I COULDN'T), was that my twitches had messed up my muscles. Granted, that was complete speculation & just something I figured in my head, but OH. MY. GOD. I just looked up Dystonia for the first time, & why was this never brought to MY attention? I always wondered why I never heard of another kid with twitches, & just could NOT roll their shoulders back or stand up straight. Whenever people asked me why I did it I seriously said that it felt like the twitches had just contracted my shoulders. I said those exact words to this doctor. & he wrote down that I had Dystonic Posture, but never told me or my family..

As with the heart problems, he also failed to mention that muscle pain/problems weren't a symptom of either of the diagnoses we were considering no matter how many times I mentioned it. Obviously I know this now, but I was eleven years old when I first found myself in his office. I trusted him as a doctor & I had no reason to research because, well, at that age I still believed that doctors wanted nothing more than for their patients to feel better. WHY were these symptoms just blown off?? & more importantly, how could he write "Displays Distonic posture" "Has Dystonic posture" & "indicative of Dystonia", & never ever so much as mention it to me??

 

~ I'm sorry that I can't provide the exact dates for these, but I'm trying to keep the papers in order & I really just don't feel like flipping through all of those, especially when half of them look the exact same.. But. in 2007 he ruled out a Tourette's Diagnosis because my twitches subsided for three months. (Might I also add that after that was thrown out, not a single other diagnosis was achieved or even avidly pursued, but he continued to treat me for about two years with NO diagnoses or even possible explanations). On December 16, 2009, my EEG writeup says the words "Emerson carries a Tourette's Syndrome diagnosis". Really? I do? Because correct me if I'm wrong here, but I'm PRETTY POSITIVE that you said "You do not have Tourette's" to me. & since that day my tics have only gotten less noticeable & more manageable, with the exception of a few spikes.

 

~ The EEG was to check for sleeping seizures. I pretty much told him that the test was useless the second he proposed it because when I lived with my bestfriend, which was last summer, we shared a bed every single night. I'm fairly confident that if I was having seizures in my sleep, she would have noticed. But he trudged on & I just decided that the test couldn't hurt anything. First off, it was a test to check for sleeping seizures... but he didn't schedule me an overnight EEG. Instead he made me stay up for fortyeight hours & then come in at nine AM for one. I'm no doctor & I don't know much of anything about EEG's, but that just doesn't seem right to me. Dr. G agreed with me when I told him about it. Much to their surprise, as well as my own, I couldn't fall asleep when we got there, but they did the EEG anyway. When Dr. R talked to me about the results, he just said that they were "highly abnormal" & that I needed to come in for more testing. He never trusted me enough to even so much as hint as what he thought was going on. We had to jump through hoops just to figure out that it was my QT that was messed up.

My Dad has horrible mixed sleep apnea & Narcolepsy. Just wanted to throw that in. Anyway. After the EEG, my Dad lost his job, & I lost my insurance. Once we regained it a few months later I had already vowed to never see this doctor again & my symptoms had improved, so it was just never looked into. I'm having trouble reading this one, but the part that I THINK is referring to the abnormalities says "During this study, there are rare left parietemporal (P3/P7 maximum) sharp waves. There is no asymmetry or frequency or amplitude seen.... This is an abnormal routine EEG for age & state secondary to the presence of rare left parietemporal sharp waves. These findings are consistent with a focal area of epileptogenesis within that region." It also goes onto say that no seizures were captured. Can someone PLEASE explain that?? I have the actual results too, if that helps.

The "Electroencephalogram Diagnosis" was "Abnormal secondary to rare left parietotemporal (P3/P7 maximum) sharp waves".

 

~ I was told I had P.A.N.D.A.S. by a psychologist about a year after beginning to see this neurologist. Even after mentioning this to him, my ASO titers were ran ONCE & my AntiDnase-B titers were never run. Just completely forget P.A.N.D.A.S. for a minute, my pediatrician was the one to notice that I got strep "more than anyone [she] had ever seen" BEFORE my symptom explosion. When people asked us how often I got strep, we seriously just told them "Always", because literally every single time I went to the doctor, she just tested me for strep because we really never knew. & literally every single time she did this, I was positive. Specifically for GABHs levels, one instance of which WHILE I WAS SEEING THIS NEUROLOGIST she described as "the highest infection" that she had ever seen. WHY, if you're treating a child with this kind of strep history, would you not only not consider it to be a factor, but go so far as to only run their ASO titers once? On that note, MY ASO WAS POSITIVE. These read a little weird, it says "Positive H 100-199 H"? I've looked it up & down but that's really what it says. I've never seen an ASO expressed as an interval? This was also run in 2006, BEFORE I mentioned P.A.N.D.A.S. So apparently he just never bothered running my ASO titers when I brought it up, despite the stack of positives at my pediatrician.

 

~ I was never once tested for Lyme Disease. I was never once even asked if I had been bitten by a tick. When I say "symptom explosion" I'm referring to when I woke up one day in the sixth grade with debilitating twitches, uncontrollable OCD, & horrible anxiety. It was only when these popped up that everyone in my family seemed to be able to recall minor twitches from as far back as four. I had been dealing with OCD & anxiety since I can remember, but until that point they were manageable. I simply refuse to accept the notion that this explosion just so happened to come about less than a year after I was bitten by that tick. My muscle pain, joint pain, & heart problems came about a little after the initial symptom explosion, they were NOT around before the tick bite. Once again, nowadays I would have done my research, come across Lyme Disease, & asked about it, but at the time why would I have thought that a simple tick bite a year prior could be the cause of all that? With symptoms that aren't covered by P.A.N.D.A.S. & especially not Tourette's, why was Lyme never considered or brought up? Eleven year olds are not supposed to have radiating joint pain & muscle pain so bad that they can't lift their arm above their head some days.

The number one question I have after reading all of these papers is WHY WERE SO MANY SYMPTOMS IGNORED? WHY was I treated for (& apparently still hold a diagnosis of) Tourette's & then effectively Nothing-At-All Syndrome for years with this mountain of other symptoms? Tourette's does not even BEGIN to explain my OCD, muscle pain, joint pain, heart problems, sleeping issues (Insomnia then Narcolepsy), anxiety, depersonalization, sleep paralysis, hypnagogic hallucinations, BRAINFOG BRAINFOG BRAINFOG, a myriad of emotional/psychiatric issues, or ANYTHING ELSE.

Why was I left in the dark??

 

Please respond. I am lost & angry right now & I don't even know what to do at this point.

 

Wow, what a wealth of information you have now!!! You do realize that you are well on your way to getting appropriate treatment!!! I understand how angry you are. My dd had the same test for seizures, had EKGs, had all sorts of testing...and nobody was able to come up with a diagnosis until her symptoms went whammo and she started hallucinating. Then I got lucky and just happened to get an ER doctor who had heard of PANDAS... Then got to Dr. B. who knew that even though the first Lyme test was negative we needed to get a better test which turned out to be positive. Get MAD, then get even by getting better and then let all the health professionals you saw what the problem was really...educate them so that maybe they will be able to recognize the symptoms and associate them with Lyme and/or PANDAS the next time some poor kid comes into their office with them. I am going to write letters to the ER doctors that saw my daughter as well as any other specialist that she saw once I get further resolution of her symptoms. Kudos for your perseverance! Ever thought of becoming a doctor? You keep fighting for yourself!!!!! You are doing a wonderful job!!!!!!!!

Link to comment
Share on other sites

PixiesMommy ~ I understand that to some degree but I just cannot fathom how he heard me complain about my shoulders SO many times, & he knew what was causing the pain, but didn't tell anyone. The thing about not wanting to scare me might make sense if he wasn't so found of throwing the word Epilepsy around so much... & THEN NOT TELLING ME WHEN HE FINDS IT. I've always tried to be positive & think the best of that man because he's got one of those sweet old man faces that is just so difficult to hate, but I can no longer believe that he functioned with my best interest or ultimate outcome in mind. What would make a lot more sense is if he's ACTUALLY some secret RXhappy agent from the pharmaceutical companies sent in disguised as a doctor to boost their profits. At least, that's the most logical explanation in my head.

 

KeepTrying ~ My friends already joked that I'm fueled by anger. As if I needed any more motivation, hahah. I'm not exactly feeling optimistic right now & I'm trying my best not to be negative, but I have been telling myself that tomorrow will be a better day for five years now.. & sure enough, I'm still here, I'm still sick, & I'm just as bad off as ever. I know that eventually something's gotta give, but I'm tired of trying to convince myself that that day is coming anytime soon, much less tomorrow, just to set myself up for disappointment. If I'm being totally honest I actually just got over an incapacitating episode less than an hour ago, & one of the few things I could bring myself to say out loud to my poor Mom was "The only reason that I get myself out of bed each morning just to drag myself through H### yet again is the hope that one day I'll make sure someone doesn't have to go through what I've been through."

 

AmbersMommy ~ I am never going to be a doctor. Never, ever, under any circumstances. I get asked that all the time on here & I always say that there is just absolutely no chance that I could ever bring myself to work next to people who are capable of treating people the way some, MOST, doctors do. I just could not do it. I've got the "Get MAD" part down. That man has a special needs son. I wonder how HE would have felt if a doctor that he trusted only contributed to making his son worse. Without fail, for YEARS. I do plan on writing him a letter educating him on Lyme & P.A.N.D.A.S., but I definitely plan on including a section just to make it clear how much misery he brought on a sick little girl & how much he contributed to the deterioration of my health, sanity, & faith in people. Oh, & lest we forget... that when I first brought up P.A.N.D.A.S. at twelve years old, I WAS RIGHT.

 

_______________________________________________

 

I just don't want to make a new post.. But I felt the need to say this.

 

http://i254.photobucket.com/albums/hh89/PerfectTown/PANDAS.jpg

 

^^ I made that over a year ago. My bestfriend had been grounded for about three months, but there was this festival-type-thing coming to our town so she was going to go there & I was going to meet her. I remember waking up, if you can even call it that, earlier than usual, dressing as cute as I could cos I was so excited to see her, sitting down to wait for my parents to be ready to take me, & waking up two hours later. I felt horrible arriving late & unable to explain how I "woke up" but never fell asleep, & I definitely didn't feel any better when the first thing she said to me was "Ailidh... Are you drunk?"

All I could do was laugh. As if I had the time between naps to drink. Or the muscle tone to hold a bottle, for that matter. To this day, I really don't know if she fully believed my denial or not, because I would surely doubt someone in my position. I couldn't keep my eyes open, I couldn't walk a straight lane, coherent speech was out of the question, as was was standing up without falling over or sitting up without falling asleep for more than a few minutes at a time. I still remember the look of confusion on her face when I told her that I was that exhausted. I could sleep fifteen hours anytime, anywhere, but I was still tired enough to get legitimately mistaken for inebriated. Still tired enough to fall asleep in restaurant booths.

 

I have gotten a little better (if for no other reason than getting used to it), but one thing that has changed is the message in that picture. "It is so popular to say 'I am not defined by my disease', but I have forgotten who I am without mine". P.A.N.D.A.S., & God only knows what else at this point, might have robbed me of quite a bit, but my personality, my "self", is not about to be added to that list. Sorry for the cheesy analogy, but if I really am "fueled by anger" like my friends joke, I got a full tank today. Excuse my French here, but I refuse to become my disease because I need someone to be after I kick its a##.

Edited by EmersonAilidh
Link to comment
Share on other sites

EmmaLily ~ It makes me so happy to actually have another patient out there. I'm glad to have someone who can understand where I'm coming from. :)

 

Vickie ~ One thing that I said to my Mom last night was that I wasn't sure what was motivating me to feel better more; my own happines & wellbeing, or vindication. The thought of being able to walk into his office & say "Nothing is wrong with me today, & I owe none of it to you" is quite the liberating one.

 

Lori Ann ~ I responded to it! :)

Link to comment
Share on other sites

I'd say take the inspiration from where you can... but channel it into positive actions to get the medical help you need and deserve. After all our bad experiences with local docs, it's very hard for me to keep my cool sometimes - it's my son's life at stake, for god's sake! But I've learned that getting too "in their face" too quickly pretty much dooms any new doc appointment to dismal failure and another burned (or napalmed) bridge.

 

Wish I could find it, but somebody on here had posted a link at one point to a doctor's blog entry where he candidly discussed why many doctors are intimidated by patients with chronic illness. He pointed out that these patients remind the physician of his limitations, make him feel like a failure for not being able to "fix the problem," and often confront him with somebody who has done extensive research and knows more about specific, rare conditions than he does himself. It was illuminating to gain a little insight into the doctor's psyche and understand their side of this.

 

It doesn't begin to excuse the way you (or my son, or countless other innocent, afflicted kids with PANDAS / PITAND) were treated. But it reminded me that these rare, complex, multi-disciplinary disorders are hard on the docs, too. So take a deep breath, count to 10, and try to find that special doc in your area who is willing to be a true partner in your care, not a condescending autocrat or a stubbornly dismissive skeptic. And if you find him or her... do everything you can to nurture that relationship! (We had one of these docs - an LLMD - but he passed away suddenly in 2008, and we haven't found his equal in our area since.)

 

Good hunting, EA!

 

 

EmmaLily ~ It makes me so happy to actually have another patient out there. I'm glad to have someone who can understand where I'm coming from. :)

 

Vickie ~ One thing that I said to my Mom last night was that I wasn't sure what was motivating me to feel better more; my own happines & wellbeing, or vindication. The thought of being able to walk into his office & say "Nothing is wrong with me today, & I owe none of it to you" is quite the liberating one.

 

Lori Ann ~ I responded to it! :)

Link to comment
Share on other sites

WorriedDad ~ Oooh my God I think that I've read that article or at least one very similar to it. It was on some website for women with chronic illnesses. I remember that it had a clever name. :/

I remember that article reinforcing my belief at the time that doctors were inherently good. It was talking about how frustrated they became when faced with a patient that they knew they couldn't treat or make better. It made sense & in a way I did feel bad for all of the doctors who probably really WERE trying, but if you know your limitations, give a referral.

 

Hunting begins THIS WEEK! I am hopeful. :)

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...