Tuesday, October 21, 2008

The Neurologist: in brief

The brief news is that the neurologist, like the many, many specials before him, is dumping me after two visits. I will be brief and bullet point the meeting and the exchanges were often too surreal to believe.

*He wants me to stop all use of diazepam as ordered by the hospital (3 to 4 pills daily). The hospital ordered it to increase the efficacy of my anti-seizure drug, Lyrica due to the double blind study (as well as many others) as published in the Archives of Neurology 2002 and others which show that it helps people have longer periods of times between seizures and less seizure. His quote is, “That is their opinion, but I have mine.”

*He wants me to NOT use Ativan DURING a seizure series, despite that it was a) prescribed by the hospital and b) According to Anticonvulsant therapy for status epilepticus in 2005, it was found in a survey of 11 studies of over 2000 patients to be the most effective for treating severe seizures (tonic-clonic) and severe seizure series. (the second most effective: diazepam)

*The reason for both of these is that they are “addictive.” Seizures apparently are not.

*He believes based on what he has heard that I have pseudo-seizures.

*When I asked him why, when the US epilepsy society has 500 “common” seizures and 2000 rare seizures he has, without tests concluded I have a type of seizure that is lifelong and does not respond to treatment? And how many patients does he tell, on their first visit, without tests, that they have ‘pseudo-seizures?'

*He did not answer either question (though I asked them several times), he is not initiating treatment. He has however had a long talk with my GP about “the type of person I am” (My GP believes because I had a complex partial in his office instead of a “Grand Mal” that I had a ‘pseudo-seizure’).

*He said he believes that it is unlikely that someone my age would develop epilepsy. I said the epilepsy Society of Canada said 40% of people develop seizure disorder in adulthood due to things like PARTIAL STROKES (hand raised) or vascular degeneration in the brain (hand raised).

*He then tested my legs, and found that my ankles had no deep tendon reflexes and one knee is very diminished, one partially diminished deep tendon reflexes. This took 10-15 minutes. I asked him WHY he did that. He said he wasn’t a movement specialist neurologist and just dealt with seizures. (????? We think he was checking to see if I was lying).

*He emphasized again the addictive nature of diazepam and Ativan using the exact same phrases as my GP.

*He said he would take an MRI and by looking at it would determine if I have epilepsy or pseudo-seizures (he is looking for deep scarring, which is what happens during Grand Mals over years, but may not show up over the few months I have had them; much as MS spinal demyelinization doesn’t show up for 6 to 9 months – or even 2 years).

*I asked him how I was to improve my quality of life, which is pretty poor in the four months while I wait for the MRI he wants. He had no comment.

*He also believes that I have pseudo-seizures due to the description of my absence seizures.

However, as we pointed out, I had TIA’s regularly BEFORE having a partial stroke and then later seizures. I still have TIA’s. I also have muscle seizures due to muscle and nerve death due to my disease. My disease also has a component of Parkinson’s (is related to), which causes instances of Parkinson’s Fog. We admitted we did not know which were seizures and which were “Fog” and hoped he would help us.

*Only if he sees what he wants on the MRI will he initiate any treatment at all.

In summary, we are now going to write a letter to have Cool Aide replace our GP since we have heard our GP’s sentences coming out of three specialist’s mouths. He has delayed referral to a pain specialist for months until I came so he could tell me his opinion of me. He has not initiated treatment for ANY of the illnesses found by tests, nor will he even do follow up tests for existing illnesses (like progressive anemia). He has not in the 9 months or so, initiated a single medical treatment, or independent referral and though asked for I currently do not have: a motor neurologist, an endocrinologist, and a respirologist (sic) for starters, even though he has signed a note saying I need a continuous oxygen concentrator.

Then we will have to start entirely from scratch. Only now, I am currently too exhausted and have been since June to make it to GP appointments and Linda as medical power of attorney goes in my stead.

“Pseudo-Seizures” are a point of debate because every year, more actually named seizures are found and taken off the list of the “Pseudo” – it just means that when the seizure is occurring it is not showing on the EEG machine. Or showing a typical seizure activity. However many specialists feel that it is just another form of seizure that is deep in the brain and thus cannot be read by current instruments. However they feel, people with “Pseudo-Seizures” have a pretty bleak future as there is no medication which treats them, most people with epilepsy are accused of having 30% of their seizures fall into this bracket; so no way to stop them, no treatment and you get a “Pseudo” label to boot. It is however easy for a lazy neurology to instead of investigating the various types of seizures a patient has or even asking, to simply label, as this one did it into two group: Epilepsy (2500 types), Epilepsy with Pseudo and/or Pseudo. Since Pseudo is “not my inch” for seizure specialists, that means they get turfed and after their one visit (or maybe a follow up, it is “good luck” and goodbye.

Cheryl has pointed out that not using Ativan at home only means that I will be more likely to have longer and more violent cycles of seizures at which point the EMTS will take me to the hospital at which point I will be given a main line of Ativan. They will also give me a limited prescription and advise me to take them during an “aura” (what you get before a seizure – for me, smell of burning rubber, blue sparkles or “something is wrong”). So a diminished quality of life, and more time in recovery from the hospital (and $86 for ambulance).

The question is, do I believe the ER neurologist who SAW me have a seizure, and who I asked if it was a Pseudo and said NO? Do I believe the EMT and ER senior doctor who saw me have a series of three to four seizures and who I asked directly what it was, and was it “Pseudo” and he said “No, it was Atypical” (meaning a seizure that is not a simple tonic-clonic and recommended Lyrica instead of the traditional drug until the exact seizure was found, along with Ativan and the Diazepam.)? Do I believe Cheryl who has seen several hundred or thousands of people with seizures in her decade plus of EMT work? Do I believe the progression of my disease which indicates that seizures at this point due to several reason (I can discuss them later)?

Or do I believe a man who has NOT seen me in a seizure, who did not ask me more than two questions but did have a long talk with my GP about “what type of person I am” and tested my knees and feet?

The following is the description Cheryl wrote up for the Seizure Neurological specialist, those who have some experience may find it of interest. As for me, I am seeing my quality of life, which is pretty poor due to reduced memory among other issues, going down for the near and far future. At no point did the Neurologist take any of my diseases into consideration. Thank you all for your best wishes. But right now I am three for three.


**

My name is Cheryl Gilson. I have witnessed Elizabeth McClung having seizures on numerous occasions. I have over 10 years experience in Emergency Medical Services as an EMT and First Responder. I also grew up with cousins who are epileptic. I am familiar with seizure disorders and a number of types of seizures.

Elizabeth and Linda asked me to provide this document because I have witnessed so many of Elizabeth’s seizures. I see her nearly every weekend so I have seen numerous seizures. I am just going to describe the seizures I have witnessed in general, as well as two specific recent episodes. I hope this report provides you with needed information.

The majority of the seizures I have witnessed are absence seizures. Elizabeth will suddenly stop speaking or reacting to her environment. It is as if someone has hit a pause button. She stares blankly and her mouth often either opens and closes rhythmically or she chews at her lip. When she becomes aware again, she is unaware of having had a seizure.

I have witnessed partial seizures where there is clonic-tonic movement of one limb (usually the right arm or right leg) in association with an altered level of consciousness.

I have witnessed what would seem to be a tonic seizure where the muscles become rigid, the back is arched, I hear a stridor breathing pattern and sometimes Elizabeth screams.

I am going to describe two recent episodes I witnessed.

Two weeks ago while staying the weekend at my residence Elizabeth had a series of seizures when she first went to bed. The series began with an absence seizure where Elizabeth simply stared and did not respond when touched or spoken to. That state lasted approximately 30 seconds. Then her eyes closed and she moved into a tonic state. Her muscles contracted and she was arched off the bed. When I touched her, the muscles were rigid. That state also lasted approximately 30 seconds. Elizabeth was completely unresponsive during this period and during the following period. After the tonic state Elizabeth’s muscles all relaxed and then she began convulsing. Her muscles were rapidly constricting and relaxing causing the jerking associated with clonic-tonic or grand mal seizures. This lasted close to two minutes. After the convulsions stopped Elizabeth was unresponsive for a number of minutes. Then she became responsive although she spoke of being extremely tired and wanting to sleep so we let her sleep. It appeared to be a post tictal state.

This past weekend I stayed with Elizabeth and her partner Linda. While speaking to Elizabeth she lost consciousness. She came around a few minutes later and it appeared that she had experienced a TIA. (She has had TIAs before and I believe the Emergency Room Physician at Jubilee also diagnosed a mild stroke at one point.)

Elizabeth asked what had happened and as I was explaining she said “I feel funny” and then went into a tonic state with her muscles rigid and her back arched. Her partner and I moved her to a prone position at which point she began convulsing. The tonic-clonic state (or grand mal) lasted approximately 2 minutes. Once the convulsions ended, Elizabeth slowly became responsive to us again but was very tired.

In the case of all the worst seizures I have witnessed (Grand Mal or complex partial seizures) Elizabeth usually has an aura. There seem to be three different types of aura’s as articulated by Elizabeth. She has spoken of smelling/tasting burning rubber/plastic. She has spoken of seeing blue sparkles. She often just starts saying “Something is happening. Something is wrong. I feel funny”. The last one I attribute to her having a sense of foreboding.

I am of course, not a neurologist but what I have witnessed is the same as the seizures I have dealt with as an EMT. They seem to primarily be triggered by overheating and being extremely tired. It appears that on days where her body has been under the most stress she experiences the most seizures.

27 comments:

yanub said...

So. Your GP is actively evil, and at last you will drop him and find someone else. Good. Someone in the epilepsy society must have an idea of a GP you can see who won't stab you in the back. Also, I hope you are lodging an official complaint, at the very least. The bastard deserves to have his license yanked.

Nancy said...

I'm so sorry about the specialist. These doctors clearly need to start viewing their patients as people, and paying attention to the experiences that people report, instead of making assumptions based on their own opinions. Grr. Our educational system for doctors should be revamped. Thanks for keeping us updated on what's happening--we're definitely thinking about you and sending good wishes.

Raccoon said...

my initial thoughts:

"****ing ***hole neurologist!"

It went on from there. And I'm pretty certain that my initial response to the neurologist will be mirrored amongst most of the comments.

When is your appointment in the states? Please tell me that it's soon? Like, within the next couple of weeks?

Victor Kellar said...

I wish I could fly you here ... or fly our doctor out to see you. Our GP is an actual doctor; ie she listenst to her patients,she observes, asks questions, looks for answers when she has none, TRUSTS her patients and ... when specialists are required .. actually fights for them. Our GP just doesn't present a case to a specialist, she constantly communicates with him, making sure that her patient's needs are been seen to ...

It is so frustrating to hear this kind of shit. Sometimes I want to come to Victoria and kick the snot of its little patrician ass ... this is not representative of this country ... it is small town mentality, similar to the lazy ignorance we find in Parry Sound Ontario .. which IS actualy a small town, I would have expected more from Victoria.

Perhaps that is the luxury I have living in a big city ... there are so many people here we actually have a medical professionals .. key word being "professional"

cheryl g said...

I am so fed up with your GP and his agenda. I am going to work on a draft of the letter we talked about and email it to Linda.

Is there no doctor in BC capable of thinking beyond the text book example of how something should present?

Neil said...

Tears of frustration... Tears of rage...

Yes, raccoon, my thinking mirrors yours, word for blanked-out word.

Beth, it's obviously that your GP has it in for you. Get to Seattle and start fresh, WITHOUT a report from the GP, please.

My Beloved suggests finding an appointment with a psychiatrist; someone qualified to assess your mental state, who can say "This is physical, not a mental problem" and can assure the neurologists that you really aren't crazy, that it's not "in your head."

I presume the diagnosis of pseudo-seiures is an admission of incompetence, an admission that he is unable to treat you.

We shall pray for the medical professionals; perhaps pray that they need each other and get shafted with the same shaft they've handed you.


Courage, Beth and Linda; get to Seattle.

Cheryl, that's a great little report. Too had it can't do any good. Maybe if you changed the gender; then the doctors might take "him" seriously.

Trying hard to send positive thoughts and love to all three of you.

By the way, I've listened to the song "I will follow you" and it really is very silly. Romantic twaddle.

Love, more love, and manymany zen hugs, dears; you both (three?) need them,
Neil

Caroline said...

I cannot get over this, the rotton ****ard that is your GP wants shooting. What's more, you are intelligent and articulate as are Linda and Cheryl, how the hell would someone without your intellectual resources go on? they wouldn't of course, they would be forced to shut up and suck it up - I see no way forward with these people except to take the fight elsewhere, rest, regroup, start again with Seattle. I admire you so much for not rolling over, truly you are one of the feisty ones :o) x

SharonMV said...

I hope you can get a new primary care doctor. If you can, try to get an internist (doctor of internal medicine) rather than a GP. Here is the US internists often go into family practice. But they have more training & can handle (& actually treat) a more complicated patient.
I would continue the medications advised by the doctors who saw you at the ER & hospital. If you do ever find a specialist who is not completely useless,continue to see him or her & try to get whatever treatment & advice or tests that you can. Even an obnoxious doctor can be of use sometimes. I hope you find someone, one doctor at least on your side.

Sharon

OneSick said...

I'm with Yanub 100% on her comments on the GP. Evil, evil, evil man! There is a special place in Hell reserved for him.

And as for the the neurologist... Well, I have to go in a minute, but I take issue with everything he said and did. He should not be allowed to practice medicine.

Neither of them should.

One day the Big Medical Book of Seizures will be (re-)written and people like you and I, who are accused of faking it (yeah, right!) or having a "conversion disorder", (which is the current preferred term for "pseudo-seizures"; i.e. "the psychological stress is converted into physical symptoms) will be exonerated.

When I am in charge, I will make it illegal for doctors to accuse one of faking it without a full psychological examination.

OK gotta go, or I would take up all of your comments space.

-OSM

rachelcreative said...

I was so hoping your fears would be lifted and this neurologist would actually want to have you as a patient and not just write you off.

I am so so so sickened and angry and frustrated for you. For you all.

I agree with Neil. Cheryl's report is great. Too bad the neurologist is too up his own @rse to listen.

It comes to something when you have a severe chronic illness and you're better off without a GP!

I cannot imagine how you must be feeling. Sending you lots of love and feeling ready to sign up to an angry mob to riot against stupid harmful doctors in your region!

Lene Andersen said...

So your GP salts the well (is that the expression?) before every meeting with a specialist? And the neurologist is concerned about addiction (despite you being terminal?)? And hasn't read any of the literature published in apparently the last century? And your GP hasn't treated you for ANYTHING? And all they talk about is what "type of person" you are? Because that's relevant? Have they all been brainwashed by Atwell-Pope??? It's all in your head??

It makes me cry. It does. I'm so, so sorry. I wish I had millions so I could send you to the US now, this week.

My dad had TIAs and strokes and developed seizures. I guess they were a lie, too? Fucking bastards. The fact that it'd be a good idea for you to see a shrink to get certified sane in order to prove you're sick when all they have to do is LOOK AT YOU for more than 2 minutes (or read the reports from the ER) is unbelievable. The onus of proof is on you, the sick person? The dying person? Instead of on them? Guilty until proven actually sick, then? Talk to the nearest three-year-old and they'd diagnose you better.

Yanub's right - call the Epilepsy Society. They might be able to help you get around the system. And what about the ER docs - any help to be found there?

Big hugs.

Veralidaine said...

ARGH!

Great letter from Cheryl, too bad the specialist has his head so far shoved up his rectum that it's too dark to read.

Good god this is so awful. I so wish this were a brilliant fiction. I understand in a way the people who write to you and say you must be lying, because it is TERRIFYING to read this and KNOW it is true and it is IS happening to someone I love and it COULD happen to more of the people I love.

Devi said...

"What kind of person you are"? The eff what? And aren't doctors supposed to *help* people?

anna said...

To tired to write. Just agree with everybody else.

wendryn said...

Crap.

Here's hoping the next doctor is better and that you get the GP reprimanded. I hate it when doctor's are dumba**es.

Elizabeth McClung said...

Yanub: I would prefer to say that my GP has become ineffective and for reasons I am not sure has confided in Linda recently, after NOT seeing me for two months that he believes I "have" some aspect of conversion disorder. Well, be that as it may, by NOT treating what he has documented (and made charts of, like my declining anemia and RBC count), he is effectively doing a Muchhausan by Proxy, getting people to believe in a disease (mental) that does not exist by skewing how they view things. Considering he forced me to come in for a meeting once I made a formal complaint over the previous Neurologist, to tell me that he felt "threatened by me" and I have an "abrasive" personality (because apparently asking again and again, "When are you going to do follow up blood work, when are you going to treat me?" is unbelievably demanding), his comment was, "Fine, investigate me, I can alway retire." - reassuring words to hear from the GP who is treating you.

Nancy: I am disappointed because at our first visit the GP stated that we were a "partnership" and becuase he worked for an independant organization (cool aide) he had more time to research. I do believe that a "wait and see" attitude regarding months wait for tests when a patient has been labelled terminal by the province AND the Canadian government is more than just cautionary but nearly criminal. Thanks

Raccoon: Cheryl and Linda are setting that up, I know that we are only waiting for the MRI film from the only full spine and brain MRI done over a year ago and then they will say what tests they want before we go.

The part I find most sadistic is the whole leg exam, after he stated he didn't do "motor neuron" and then wouldn't say why he didn't it except to say he didn't do "motor neuron" - it made and still makes me feel like I am a human experiment, to dance at thier curiosity - which seems the only reason he did it; am I allowed in polite society to ask a person to drop thier pants and do a jig? No. But a specialist can.

Victor: I wish I could see your GP too. The issue with Victoria is that every teaching hospital and hospital with a specialist centre is in Vancouver so if you WANT to advance or like your career, you go to Vancouver. If you want to "make a difference" you go to places like northern BC or Northern Sask, which is void of specialists, but if you want to retire and have the sun and no competition, you come to victoria. Even so, the number of Neurologists has dropped from 21 to 7 in two years, and none who see patients have hospital privilages - so I guess another reason they don't agree with the hospital, they currently don't have a practice standard that allows them to treat thier patient IN the hospital.

Cheryl: Yes, they all seem to be working in the hospital, as Linda and I said to each other, we are far more likely to get a good work-up (as well as all the medication we have been prescribed over the last year), but ending up in the hospital. Just too bad it is so overbooked that they can only take me for six hours at most.

Neil: My GP has either reached a stage of non-self direction or has reached some conclusion which I fear may be personality based (as he admitted in his last meeting to being exceedingly angry with me, simply for asking him basic questions - when he then tried to "prove" I was overexaggerating my symptoms by getting an oxyimeter, to "show me" I was at 100% saturation. I was at 72%. Did he offer me oxygen? No. Did he refer me to a respirologist? No. Did he write it down. Only after I demanded he do so three or four times, which again angered him. You have a "previously athletic" non smoker female with 72% oxygen stat in your office and your only response is to SULK because you couldn't prove she is a liar. It seems medical concerns have taken secondary considerations.

I have been assessed by the Dean of the local university of Psychiatry and Physcology and determined not to have PTSD or other 'conversion' aspects, but since he is not a GP specialist regarding 'conversion' disorder - this is ignored, since I was, along with my father from the same original GP diagnoses with PTSD when my passing out and tremors originally presented. Both of us were ruled out, he in 3 weeks, me in a year. (it is very hard to "prove" you don't have underlying deep psychological issues to a specialist who won't read anything from anyone else - and who takes your asking THEM questions as evidence that you are just trying to fake it).

Caroline: I also see no other way, as the wait for more specialists would be extremely long, but without the specialists, who would supervise treatment once Seattle orders it - this is the problem, will they acknowledge the world center in Seattle or refuse just on the grounds of arrogance? I had believed once the hospital verified vascular degeneration, as well as central autonomic failure which was confirmed (or at least the autonomic failure) by not the specialist, but the head neuro specialist in Vancouver along with the independant four limb peripheral neuropathy, the autoimmune diseases (unknown), and the progressive anemia. I mean, even the last ER visit has a page attached saying, "GP must treat anemia or investiage URGENTLY" - Anyway, my ID number is 364765 and I go in the M block for medical experiments. I'm sorry, but when so many people KNOW and yet refuse to act, is it not a form of medical experimentation or what, will they go, "Gosh, got that wrong" when I am dead? To have that happen in a split second decision in one thing, to have it happen over the course of a few years, that goes into crimes against humanity.

I HAVE seen the only interist, and he referred me to the endrocrinologist who was good, but didn't do follow up - so far I have YET to have a specialist who will see me more than twice, most just once and then BAM, decision made, "Not my inch" or "Yes, major problems but I don't deal with them and don't know who does" and out the door.

OneSick: I have major issues with conversion disorder because the idea that I could after two years, as a highly intellegent individual who goes to the top cousellors in the entire profession have NO IDEA, that I am being physically affected, when tests show I am not; I have an unknown autoimmune disease, is ludicrous. Yes, I have in the past had a PTSD and knew that is what it was and worked with my GP clinic in the UK to deal with it while I was on disability (it manifested itself as a phobia and a certain type of pain, I was aware of both of these, much as people who have panic attacks after one or two KNOW they have panic attacks).

The problem is that the top BC neurologist admitted that almost every degenerative disease from Lymes to MS, and every invisable pain or fatigue disease from Fibro to CFS/ME has or continues to be treated as "conversion disorder" (she even told me she feels most/many people with MS HAVE some aspect of conversion disorder as do most people with epilepsy). Well, that would be GREAT if they could treat "conversion" disorder, but they can't, currently BC specialized clinic has about a 6% success rate (which begs the question of how many people without conversion disorder are put in it?). So, a 50 to 75 year history of calling actually diseases that were not properly understood conversion disorder, and a specialized clinic that has a lower success rate of treatment than the original heart transplants tried on dogs - why does it continue to be funded? Why not simply call it, "Seizure of unknown origin" or the like when the end result is no real chance of getting it treated anyway. Is it to sooth the egos of the specialists? The problem is that if any other program or treatment has such a low success rate and was part of a hospital program, it would be shut down years/decades ago - yet this is not. The most difficult patient with mixed mental illnesses has at least 5 to 10 times the chance of "conversion" of being treated successfully with specialized medication for resistant brain metabolizm. Conversion only offers a black box which from EACH YEAR, come the labelling of genuine seizures, genuine diseases that are rare or unusual in presentation. After 50-70 years of this, would they not admit, that perhaps the majority of those labelled "Conversion" are just people with diseases that specialist are currently too ignorant or lack the proper tools to treat? Certainly that majority can be proved when you look over a 25 year history of labelling.

RachelCreative: Oddly, I HAVE developed a disorder, which is an overwhelming fear of going to specialists, I don't know whether this is irrational or not. But certainly the way one is deemed, "Human, no, a non-human" gives me some chills.

Right now, I fail to see the difference between 21st century and 19th century medicine if 21st century medicine can only SAY what I have wrong but will not act to treat it.

Lene: Well, they know it isn't in my head, but they feel SOME aspect of it is in my head, and as each aspect they believe is in my head is proved wrong they go further and further out - all the while ignoring and not treating the ACTUALLY DISEASES that have been found, or indicated.

I have the feeling of the people CFS must have had for years until suddenly a heart specialist doctor in Vancouver got CFS and voila, he wants to study and find the "physical cause" of CFS becuase if it is happening to HIM, it must be real, and suddenly all the CFS patients aren't being sent to the "conversion" clinic but to him instead as he comes out with paper after paper showing possible physical causes. So, I think it is time for a great many of BC's specialists to get ill, because that seems to be the only motivation - human compassion, or thier doctor's oath both seem to do nothing for them.

As I mentioned earlier, I was certified sane and not having conversion or PTSD about a year an a half ago when this first came up. But I couldn't get a single specialist to read the report, so it sits in my health file, which I guess will be usefull to Linda when I hope she sues them for discrimination.

It is the refusal of specialist to even LOOK at the tests or conclusions of the specialist IN THIER FIELD at the hospital ("I have another opinion") which baffles me, is EVERY egomaniac sent here?

Sadly, it was the epilepsy society who got me in to see the current Neurologist as he is the only one who specializes in seizures. Perhaps once I get a new GP, I can try one in Vancouver who hasn't been tainted with "long talks."

Veralidaine: Yes, I told Linda that when I write this as memoir, as a final kick in the teeth, the book will win the 2009/10 Science Fiction book of the Year.

Anyone who is with me for a period of longer than 20 minutes knows there are many things serious wrong with me, which stem from autonomic failure. I wish it were otherwise but it is not. I KNOW egotistical people who are A-type personalities and driven and if THEY have spent a few days with me and say, "Hey, you're terminal, you are autonomically failing and you are going to die" - and they have about 6 different qualifications, I take that as a fairly decent confirmation of what was originally diagnosis by the one specialist who use.....wait for it.....The SCIENTIFIC METHOD!!!!!! Since there, there has been acknowledgement of individual conditions but no other comprehensive dianosis except the one that I developed three different diseases simultanously.

Devi: Well, apparetnly your manners and ettiquite are of far more importance than actual treatment, are you "one of OUR people?" - well I suppose not, this is VICTORIA after all.

Anna: thanks.

Zoƫ Robinson said...

Your GP is actively attempting to deny you treatment and is abusing his position, especially in relation to him "telling you what he thinks of you". He has no business practising as a general practitioner, or any form of doctor for that matter.

He should be struck off, and would be if you complained to the medical authority.

Kate J said...

Nothing to add to what everyone has said, and which you (and Linda and Cheryl) know only too well. The whole situation is a nightmare... and you're the one who's living it. Well done Cheryl for documenting the whole thing, maybe it'll make a difference to a doctor somewhere, sometime...
love & peace

Lisa Moon said...

UGH, I think that's the standard specialist thing; see you twice then BuhBYE! F*$&ers...

I'm SO glad you've got such great documentation and urge you - despite knowing how it must be yet another mountain to climb - to file complaints with the BC College of Pysicians and Surgeons agains BOTH this moron GP and this specialist who listened to his clealy slanderous opinion of you.

Yes, I've experienced specialist arrogance (one told me the muscle I tore along my spine at work wasn't something he'd even look at since I was so clearly FAT and should get off the couch and stop eating bonbons! OH.MY.F-in.G*d). Despite the fact that muscle was in my upper back and was torn while lifting something required of me... would have happened to anyone... I digress.

If you go to the College website there are instructions on how to lodge a complaint. Clearly they are intimidated by someone smarter than them who has done sufficient research and it irks their god complex. Pathetic!

I'm so sorry this has been nothing but struggle after struggle for you. I wish there was something more I could do than read and offer my support...

And I do agree that MD training includes labelling people as psych cases when they don't know what's wrong and/or you don't fit into their idea of some meek patient hanging on their every word.

sabby said...

I hope you soon find a neurologist you can trust, someone who will take an active interest in your case and do their best to help improve your quality of life.

You're right that doctors break a sacred vow when they abuse their patients, although there should be some way of punishing them besides malpractice lawsuits when they are so emotionally abusive. Good luck to you in finding a real professional who can help! <3

tapetum said...

Grrrrr. Your doctors seem to need a fast, savage reviewing of the Hippocratic Oath. They seem to have mistaken it for the Hypocrites Oath.

(I'm having some trouble getting the system to ID me, if it doesn't work, this is Perpetual Beginner.)

FridaWrites said...

These guys are nuts! Whatever happened to evidence based medicine? Ignoring the journals and not treating you just because? That's superstition, not science. They don't know what they're doing.

That's a great letter from Cheryl.

Queen Slug said...

Um, did you run over your GPs dog or sleep with his wife? Cause damn if it doesn't seem like he hates you, I mean HATES you. What an asshole.

I do hope Cool Aide can hook you up with a doc who doesn't hate so much.

thea said...

Shit this is dodgy.

Stop pills that might be addictive... Isn't that like stopping insulin because many people have dhown to be dependent on it for a lifetime after starting to inject it?

Do these doctors work for your care agency that employs baboons?

maggie said...

Hi everybody. I’m a lurker - big time - who has the same disease as Beth! Weird, huh? I’ve emailed her privately but we both forget the whole thing too often to keep a good conversation going. (I also live about 60 miles south of Cheryl. Weirder, huh?)

The reason I’m actually sitting up and typing is that I’m SO upset about all this “pseudo-seizure” stuff! I would like to set the record straight in some non-medical language.

First, the correct name is “Non-Epileptic Seizures”, NOT “PSEUDO-seizures”! The very name makes it sound fake, ersatz, simulated and counterfeit, which is why “pseudo-seizures” isn’t used nowadays, any more than “fits” is used. EFM’s GP obviously ain’t up on the literature.

So what is the difference between an epileptic seizure and a non-epileptic seizure (NEP)? In an epileptic seizure, a cell in the brain gets all full of itself and starts firing off electrical signals in all directions. Eager to join in the party, the cells around it start doing the same thing and pretty soon you have an entire brain - or a big chunk of it - firing off signals like it was New Year’s Eve! Your body responds by seizing in one of a few hundred different ways.

You can think of an epileptic seizure as being caused by THE BRAIN. Now, an NEP, in contrast, begins in THE MIND instead of the brain. Are you getting the difference? The MIND can’t live with something that is happening, be it something you ate or a situation you can’t handle or not enough sleep for your MIND to function or dozens of other causes. Your MIND starts the seizure - not your BRAIN. And to quote myself above: “Your body responds by seizing in one of a few hundred different ways.”

Why did I use exactly the same words again? Because once that nasty seizure starts, its place of origin - the BRAIN or the MIND - is irrelevant! The results to your body are the SAME. Same lack of oxygen to the brain, same torn muscles, same everything.

I hope that helped y'all get the differences - and similarities - which Beth’s GP obviously does not.

The “cure” for NEPs is meticulous charting and record-keeping which is probably not possible in Beth’s case. “Did I use a Kotex Tampon...or a Tampex Tampon?” “Did Cheryl make me cry 36 hours ago...or was it Linda?” “Did I eat carrots? And were they in combination with chocolate ice cream...or was it vanilla?” “Did I have that circular pillow on the left side of my body...or had the caregiver moved it to my right side?” ANYTHING that effects the body (inside OR outside) OR the mind, must be charted, computed, and analyzed. After a while, you can figure out SOME of the triggers, but you’ll probably never figure out ALL of the triggers. But hey, isn’t cutting your seizures in half better than not cutting them at all?

The two biggest things to check are (WARNING: more medical talk):

#1 “How warm is it?” With MSA/PAF, the ambient temperature surrounding your body needs to be 60 degrees (15.5 C) OR LESS. (It sounds like Beth gets WAY overheated.) And if you’re doing a grueling physical activity (like talking!), you create your own heat that needs to be expelled. MSA/PAF doesn’t only mean that you can’t sweat. It means that your body can’t feel when it’s hot. Your body doesn’t KNOW when it’s hot. It doesn’t know that it SHOULD cool you. And it has no mechanism of cooling you anyway. SO KEEPING YOU THE CORRECT (brrrrr) TEMPERATURE IS TOTALLY UP TO THE PEOPLE AROUND YOU! Something as simple as a caregiver turning up the heat above 60 (15.5 C) because she forgot to bring a sweater to work with her can mean an entire cycle of seizures lasting for hours and hours. And because Beth can’t tell if it’s too hot in a room...or if SHE’S too hot...she won’t even know what the caregiver has done. Scary? Yup! Helpless feeling? You betcha. (OMG, I sound like Sarah Palin! Sorry....)

#2 “Is something causing my body pain that I can’t feel?” Yes, it’s perverse. All you can consciously feel from the neuropathy and dying muscles is mind-numbing pain, yet you can’t feel if you have a full bladder or an ingrown toenail. That pain/discomfort you can’t feel sends your [lack of] autonomic nervous system all berserkers, and it can end up in seizures. (TMI: I have to keep a schedule of potty times or I will forget long enough (24+ hrs) to make myself in a world of hurt, with a cascade of bad things happening...all because I didn’t realize I had to “go” and didn’t remember that I hadn’t “gone” in many hours. We have a cheat sheet of stuff to check when I say I’m not feeling quite “right” or when Hubby notices that I’m going all blotchy, including emptying my bladder and checking for little injuries that might be causing a pain I can’t feel.)

OK class, that concludes our lesson for today. Make sure you read Chapters 22 through 24 before class on Monday - there may be a quiz. :)

Seriously, sorry for the verbal diarrhea and the length of this post. I guess I had a few months of posts impacted and had to release them all at once. It’s just that I can’t stand for ANYONE (including Beth; including her doctors) to think that Beth is having “fake” seizures. Non-Epileptic Seizures are as real as Epileptic Seizures, and HARDER to cure!

Oh, and one P.S.: The best medications for NEPs are diazepam and ativan, the meds her new “neurologist” wants to D/C! Why do they work? Because they calm the MIND...where these seizures START. So what does he do? Stop the best treatment there is (along with charting), upset her emotionally, send her home, AND QUIT!

Hmmm. I didn’t realize that doctors in Canada didn’t believe in the Hypocratic Oath....

Hugs to all of the loving, giving and helpful folks around here, Maggie

Elizabeth McClung said...

Maggie: You HAVE to have MSA or PAF, no one could describe so completely my life right down to having to write down on a calendar to take a dump without it. Or going into heat shock, or stroke, or seizure.

The whole thing about not being able to feel my bladder too - seriously it was like I WROTE the post, I sometimes worry if I will get a kidney infection becuase I don't feel my bladder, I have rention, what you said about spots, or oxygen. Amazing. Great explaination about the two seizures, though why would people WITH epilepsy have NEP as well? Because according to the lit, they do. Anyway, what you say makes sense since I seem to have partial of both; the brain go boom and a TIA will often mean a seizure that day, but then so will heat or stress or whatever. Yeah, I can see how charting would eliminate many of the seizures, but since the main stressors are STRESS, PAIN, LACK of OXYGEN, and Fatigue; aren't I already at like 3 out of 4 all the time, and anytime they work on the roof just go into seizure after seizure. I mean, I don't know if that is NEP or post stroke related but lack of oxygen to the brain, pain signals, overload of neurosignals and fatigue are going to cause both right? Oh well, that is why I am trying to stay on oxygen when I can, find someone to relieve the pain, and eliminate the stress (of which the medical people and caregiving organizations are high up there).

But you are right, the lack of memory only creates fear triggers, even if I figured OUT what a trigger would be, a system of where I could write it would have to exist, and be monitored and have SOME medical advisement in order to get medical orders for things, right? Do I have time? I don't know. The stuff about you getting splotchy is interesting, I am the ONLY person in Victoria apparently who gets Reynauds to my collarbone, not just my hands, but how high it goes shows my fatigue, and everyone goes, "Wow, that's unbelievably strange" and then does nothing. Do you have this too?

thea said...

That's indeed interesting about the splotchy stuff.

That is one of the ways I, who do not have MSA etc, know I've overdone things or am just too tired etc. I observe that it comes with some loss of sensation, coldness / pins & needles in hands and/or feet. If I get too cold or (rarer) too hot. Am intolerant of both extremes of heat and cold; was not so much so before getting sick. And also just an increase in general un-coordination in both lower and upper body + speech disturbance. So perhaps some similar processes even though the disorder is rather different.