Wednesday, May 21, 2008

The Neurological expert who gambles and the exam that wasn’t.

I could tell you the long 2 hour+ version or I could make it short. So here it goes: we were sucker punched.

The building was warm and my reynauds was up to my biceps and my fingertips were bright blue, and the receptionist helped get cloths to cover me with cold water. Then the techs started the nerve conduction test. This was the “test” which would tell them what tests they needed to do, or so we were told. And not only was the Tech there but also a junior neurologist (med school specializations?). It became quickly apparent that they were NOT doing a random test with phrases of “What leg and arm did they find the most in?” ‘Okay, do it there; no, that spike is too much, try over a little left.” Then after doing the tests they were “unhappy” and decided that my results were due to “being cold” (I had told them about the Reynaud’s coming in – Linda was saying, “she’s not cold, she’s HOT!) Anyway they went to warm up gel packs to bring my hand and foot to full heat (even if that isn’t how it is on a day to day basis).

This is when it became quite clear, during an argument, where one claimed that the result was “normal” and “we got what we want” and the other person was, “No, look at the height, that is not normal.” Countered by, “Heat it some more and we’ll try again.” That the techs were there not to do an impartial test but that they HAD my previous test, the one which said I had peripheral neuropathy, and the one where I asked Dr. Atwell-Pope: “So when you said I had a perfectly intact neural system three months ago, would you call this a degeneration?” She had said maybe the machine which took the test was off. Well, it seems that opinion along with ALL of her opinions had been passed on and these two techs were trying, pretty desperately to come up with a “normal” reading (Tech 1: “49, that’s normal.” Tech 2: “No, it should be 60 minimum!” Tech 1: “I’m doing it again.”)

Finally Dr. M. (now please do NOT confuse this Dr. M as the same as Dr. Mezei who was the same Neurologist who had Dr. Atwell-Pope “train under me” Me: “Is that where she started to diagnose “conversion disorder”?” Dr. Mezei: “(YES!) She ALSO did work closely with Dr. Hurwitz of the Neuropsychiatry unit; I believe she’s referred you there too.” – this COULD be a completely different Dr. M who is a neurologist who Dr. Atwell-Pope referred me to at UBC, though she (or rather Atwell-Pope used the same exact diagnostic verbal exam)), came in, looked at the machine reading and told the techs to give it up. She later admitted that I have “moderate to severe peripheral neuropathy.” And is that better or worse than the last time the nerve conduction was done? “Oh you can’t compare labs.” She said. Odd, since it seemed that your techs and the neurologist under your instruction where pretty much holding up the results to their screen and comparing pretty damn hard.

Well, we go through the symptoms starting from which bothers me most; no sweating/heat intolerance and had to describe the whole thing from fainting, arms green, bowel cramps, passing out, spasming of all limbs etc. Just thought I should pass on to Cheryl, Maggie, the Jubilee Hospital and two other EMT crews that….I seem to feel I get heat exhaustion, but this has not yet been proven.

At various parts I would hold up my now purple hand and blue fingertips and say, “Has anyone here heard of Perfusion? Or Oxygen” I did the tests, and had some problems speaking because as I said, putting electricity though me makes me go “funny” (since they did all the tests twice and some three times, just to try and get a better result – a SORT of thorough exam). Then to the heart. I was obviously wrong about it getting rapid heartbeats, even more so when I stand. Why wasn’t I out walking every day again? And why do I use the wheelchair? Then we did the absurd, “Stand on one leg!”, “Stand on the toes”, “Stand on your heels” “and now HOP!”

I need to let you in on a secret, I am actually quite competitive (indeed I tried to explain epee to the techs who were trying to say I had lost 10% of nerve speed sometime EARLIER in life and not noticed; and how in Epee, if I lost 10% of my reaction time when you are going across 6 feet and making binds and hits in a quarter of a second, not only would I know, EVERYONE on the circuit would know it!). And the fact that I had “failed” these tests at Dr. Atwell-Pope’s office bothered me a great deal. So when it came to hops I used my entire body to crouch from the waist and use the vertical force of thrusting the torso upward to launch myself…..well, vertically, knocking out two trays and leaving me SMACK on the floor.

“You can get up now.” Dr. M said without missing a beat (Linda wasn’t loving her at that point).

So this is the conclusion: Dr. M says that the tests show that I have Peripheral Neurological failure of the axons as well as a bit of the mylar. I have autonomic failure BUT sometimes SOME autonomic failure CAN be Peripheral and not Central, and that in my case MAYBE the peripheral neurology MIGHT be caused by an autoimmune disease that no doctor can determine but if they CAN then MAYBE it will be treatable. No offence doctor, but when they say, “When you hear hoofbeats, look for horses not zebras” you seem to have heard, “Listen for a herd of Zebras” Oh yeah, I forget the kicker, she ALSO believes that some of my symptoms are not consistent to her findings and that CONVERSION DISORDER is at play. Conversion disorder means that it is in your head, in her case she thinks it is STRESS (that would be because my original GP diagnosed me with PTSD, and then later diagnosed my FATHER with completely different symptoms with…PTSD and sent him to the SAME neurologist – Dr. Atwell-Pope – what is the chance she might find HE has conversion disorder).

I asked her straight out: “Is it not true that MS was considered conversion disorder, that RA (a type of arthritis) was considered conversion disorder, that CFS/ME was conversion disorder and that FM is sometimes still considered conversion disorder.”

“Yes,” she admitted, “but the neuropsyh unit really left no stone unturned these days.”

Oh, I told her, once they get you in a locked ward, I really believed it. But essentially the history of “conversion disorder” was the presentation of diseases, diseases that CAN be identified today, being classified as a result of being a problem in the person’s mind?”

Yes.”

I let that go. We did some dancing, like, a) Can you treat me? Well, no. But my suggestion of IVIG merited looking into in 6 or 8 months once the tilt table test had PROVEN autonomic failure. I pointed out that Dr. T’s chart proved I had orthostatic hypotension, that in fact six or seven doctors had proven that, the ONLY doctor who still “Wasn’t sure” was Atwell-pope (her prodigy!).

Could she make me sweat again?

No.

Could she stop the Seizures or TIA’s?

No.

I pointed to my feet which were at this point deep purple, “Do you believe that this is autonomic failure?”

Yes.

Can you help the irregular beats and pain of my heart?

No.

But she wanted to “alleviate my quality of life” by concentrating on dealing with the conversion disorder. Linda and I wanted to know….what was there left to treat?

We tried guessing, “Balance? The ability to hop on my heels?”

She said she would instruct Atwell Pope to see me in the Autumn. I said, “that’s after the summer.”

“Yes”

“How am I supposed to live through the summer?”

Dr. M: “Oh, you will live though the summer.”

“What will you bet on that? I’m betting my life, will you bet your medical degree?”

Dr. M: “Um, I’ll bet my word.” (My life against her WORD?)

I continued on, “Dr. Atwell-Pope would not even concede that I had degenerated and indeed PROMISED me (her word) that I had a completely intact Neurological system”

Dr. M: “Well, based on the tests (pricking with a pin, banging with hammer, etc), I would have said you had an intact system as well if I didn’t see the conduction results.”

Again, I asked, “So I know what proof I have for TIA’s, and what for autonomic failure, and what for peripheral neurological failure, but what PROOF is there of the Conversion disorder again?”

Dr. M: “Any neurologist in that room could see it.” Well since you are the only neurologist in the room, and the same one who WOULD have said I had a perfect neural system…..Linda and I wondered how MANY of her patients who get referred with stress end up with “conversion disorder.”

We also realized that Dr. M was discounting the heart, the blood pressure variation, the vascular constriction and the other central nervous system aspects to fit her theory because she said, after she had outlined her “maybe it is just all peripheral and autoimmune theory” and finished with “and thus NOT MSA.” Ah, so Dr. M thinks that this is pretty much my only shot at NOT having MSA? That what, the central nervous system decline doesn’t exist and it is done by the peripheral nervous system.

So I said, “Dr. M, it is going to take two years to try and prove that this is Peripheral instead of Peripheral AND CENTRAL, and then you have to prove it is an autoimmune, and you have to find WHAT autoimmune it is; which after a LOT of testing you don’t seem to know but you believe that is your best bet, to find this obscure autoimmune disease that no one else has figured out on the HOPES that it has a treatment that can reverse this. And after I have done all this, if ANY aspect of that is wrong, then, according to MSA, after leaving your testing I might have a year to live?”

“Well, I’d like to think the other would be true.” Fuck Dr. M, you are playing with my life. And what are you willing to lose….your WORD? Now I understand why CFS patients killed themselves and willed their body for autopsy.

She went through her two scenerios again: The whole peripheral and autoimmune with some conversion OR peripheral and central with some conversion and wanted me to know that she was all ready to put me in that locked ward to deal with the Conversion disorder. I pointed out that the Neuropsych unit did not hold the life support system I needed.

She looked confused.

“Do they like a LOT of highly pressurized oxygen left about on that unit? Do they like a private fridge for ice and cold packs? Do they like oxygen converters? Do they have treatment for an “R” Seizure (the type the hospital said I had between a seizure and a stroke).”

“Uhhhh you would need to take that up with the unit.”

“And what is the success rate on that unit?”

She looked uncomfortable and said, “Dicey.”

Now this is just me but if I have someone who is looking at a) death or b) focusing on conversion disorder to improve quality of life with MAYBE death and they asked me the success rate, I would say, “80% or better” if it WAS 80%. If it was 50% I would say, “Right now 50% but that means your life could dramatically improve in a 50/50 chance!” So what is “Dicey?”

And no offence but when autonomic failure is on the table; when autonomic failure is confirmed by the neurologist (she just HOPES it isn’t BOTH central and peripheral), then who CARES if my balance is not what you hope it could be, or whether I can hop on my toes. My feet are purple, one arm is green and the other is Reynaud’s up to the bicep. We spent several hundred dollars and I will spend several days in recovery to find out:

1) After trying to prove as hard as they could otherwise: my peripheral nervous system is moderately to severally damaged and may be dying (not news to any careworkers, people who know me or visit).

2) I have autonomic failure of at least the peripheral nervous system, the experts at the hospital in Victoria believe that it is the central autonomic failure which will kill me. Dr. M doesn’t know what condition could cause solely a peripheral nervous system to look like Multiple system Atrophy but is convinced one exists.

3) After checking a total of ONE muscle, Dr. M believes that I do not have a wasting of my muscles aka a motor neuron disease. (Linda noted that due to the body tensing stiff as a board – because I have a NEEDLE sticking out of me, they couldn’t actually heard or read the muscle, only the static – so she doesn’t know HOW exactly they made any observations on that ONE muscle, much less a determination regarding Motor-Neuron Diseases.)

4) She thinks I should try an antidepressant (She didn’t recognize the name of the UK one I take).

5) Linda and I believe that anyone referred by Atwell-Pope will come to the same conclusion because a) she learned how to diagnose FROM them and b) she has sent them a letter telling them exactly what to see. So we are going to get a second opinion, even if it means going to the states and paying for it.

6) Dr. Atwell-Pope’s “You’ll live 25-40 years” has turned to “I’m sure you’ll live five years.” To Dr. M.’s, “I have to believe you will live three years” and “I’m betting my WORD you will survive the summer” (not with her help, thanks!). So however you look at it, there is some major hedge betting going on.

7) And we feel like shit, we hate doctors, we hate doctors who torture us and then tell us it is all our fault, or that it isn’t our fault but that they aren’t going to DO anything for months to years, when we may only have months or a year. Linda felt cheated out of her “impartial” second opinion. And we are angry. And you know what happens when I get angry….I get a seizure! No, I mean I get a complaint filed and THEN I get a seizure or TIA.

8) Finally, it isn’t as funny as it would seem when you are asked in all seriousness during a neuro exam “So are your parents related? Like perhaps cousins or …..” (as in, did INCEST and inbreeding do this to you?).

31 comments:

yanub said...

Damnit. I can't decide which was the most insulting part of your medical visit. The insinuation that you are the product of incest? The insistence that you must have conversion disorder? The doctor putting her word up against your life, as if her word were worth the equivalent?

Elizabeth, what will it take for you to get a real second opinion? Can we contribute to a special "get Elizabeth the States" fund? You deserve to be taken seriously, and it is rather obvious that you are not.

Tammy said...

Holy Crap! They asked you if your parents are related??!!! Un be liev a ble.
I know the medical system here in the states is f-ed up, it cost a small freaking fortune BUT..I can't fathom all the "guess work" going on with your doctors. At least here, we get to choose our doctors, not have them chosen and forced on us (at least not with my insurance plan). If I don't like one of the doctors that is covered by my insurance, I could find one in another area.
I am so sorry they put you both through that. I know the human brain is really freaky and can convince our bodies of weird things (my OCD comes to mind), but how the hell do they figure your symptoms come from your head? Once again...HOLY CRAP! For some reason I don't think your mind can convince you to have TIA's or heatstroke, or the pain in your chest, or *pick one*. It makes no sense.

Lene Andersen said...

That made me cry.

I've got no words right now - I'm too filled with rage. And other feelings that I can't label yet. Hugs to you both.

SharonMV said...

This is just horrible! They treat peripheral neuropathy with IVIG all the time here. Not just caused by a specific autoimmune disease, like CDIP, but also neuropathy caused by diabetes & medications, etc. It's absurd that you have to go through all this & not get treated for something they actually admit you have. Yes, I think this is a situation where coming to the States would be of advantage to you. Because if you could find a good (and rational) doctor who could try to find a dx & be willing to prescribe treatment for you, then you could try to get the drug company to supply it as compassionate use. If you need IVIG, I'd do whatever I can to help you - contact manufacturers,etc. Ask the idf (immune deficiency foundation)here if they have any ideas or contacts. I do have some contacts- the pharmacy that supplies me is owned by the manufacturer of the brand I take. that would be a better way to improve your quality of life & it might even help the MSA (which of course you don't even have). In diagnosis of autoimmune diseases, you often don't have the exact, clear picture for years (or maybe never), but the doctors still treat you. Especially if you have such severe symptoms. That's a doctor's job! Medicine is not an exact science, and it is sometimes an art. A good doctor is supposed to use her expertise, including knowledge, experience, intuition & reasoning powers to from an opinion & then help the patient. These doctors are like some I've encountered who don't even follow the most important precept of their oath -first do no harm.

Sharon

cheryl g said...

Fucking hell! Did these people get their medical degrees by answering an ad in the back of a magazine? They are obviously graduates of the Torquemada course in diagnostics and bed side manner.

Wow, so I am unable to diagnose heat exhaustion properly. It's a good thing all those patients I treated in Death Valley didn't know that.

Can you get an impartial opinion in Canada if you go to a province far enough away to be outside of these idiots sphere of influence?

Donimo said...

Oy, jeezus. I want to punch her or strangle her or shove "her word" back down her throat. That was not a second opinion, not at all. I'm so sorry you went through that and will pay physically for something that won't help you at all. Double suck.

Both of you are so smart and informed and asked clear questions. I hope that you can help each other let go of some of the doctor's crazy-making speechifying and theorizing.

My heart goes out to you, Elizabeth.

[They have a good Neuro dept. at UBC Hospital. If you ever want the name of a good doc there, let me know.]

Lene Andersen said...

And it made me want to throw up and to tear that woman limb from limb. Or hook her up to her bloody nerve conduction machine and test her. Repeatedly.

First do no harm. First, DO! NO! HARM!!!

And you don't make the facts fit your theory, it's the other way around. Any first-year medical student knows that. Hell, any first-year student in any of the sciences knows that. I'd taken about a month's worth of intro psych classes when I knew that!

The only reason I'm not tearing my heir out in clumps is because I can't reach my head. Feels like it'd be the only thing that could stop the rage.

I'm so, so sorry.

Maggie said...

Oh Beth-
At first I was actually laughing...you know, it's all just you...you're making it up. If you just try harder you wouldn't have to be in the wheel chair. I could actually hear them saying these things to you.

But as I read on my laughing at the absurdity turned to tears and anger. I'm really glad that all of my years of being an EMT and teaching others to be an EMT went to waste because I can't diagnose a simple case of heat illness.

And this may be your fault becaue your parents were related? what the FUCK is wrong with these doctors? And where the hell did they get their degrees? From the gumball machine? Please, and I will do all I can to help, we need to find a doctor who is not connected with this doctor and her school of (non)thought

Tokah said...

I'm speechless. I hope you're able to follow up with someone less braindead and useless.

FridaWrites said...

Well, clearly you don't have my nice doctor.

My conclusion: Dr. M has some kind of denial disorder. I don't understand how her brain can manage so many internal inconsistencies in logic at the same time that still lead her to think zebras rather than horses. You do not have conversion disorder!

A second opinion in the States is not a bad idea, though costly to you in terms of both energy and money.

I'm sorry you've had to go through this.

Elizabeth McClung said...

Well, the truely sad part is that Linda pointed out that considering how hard they were trying to discredit the findings of the other lab during testing, when I asked how I was (becuase I wanted to know if doing the 10K and Japan had made my neurons better!), I was told "You can't compare labs!" Except that is exactly what they did. And Linda said, "You know, if the results were even slightly better in one area, they would have told you, just to show you that you a) are getting better anyway or b) that is part of "conversion disorder" and doesn't correspond with the results. Linda believes that overall the test was likely WORSE, that my peripherial system is worse or at best, almost the same and just worse in parts, or they would have used the results to help convince us as evidence. I find her logic to make sense, as Dr. Mezei (I mean Dr. M), was indeed instructing her staff to compare the results to what the previous nerve conduction was and would have happily talked about an improvement because it would have been PROOF that I don't have MSA or don't have a degenerative disease (though MSA doesn't usually destroy the peripheral nervous system anyway). Also at one point she tried to say that I had developed four to five SEPERATE conditions in the same month (the central autonomic, the peripherial nerve destruction, the Reynauds, the heart problems and an autoimmune disease) - I was like, "How many Zebra's exactly? So I will attempt to get the exact results from her, but Linda says that all that will show up in a letter is something like, "Nerve Conduction tests were consistant with earlier findings" - so I dunno, sue the hospital for the test results for a REAL neurologist to look at them?

Yanub: Actually, the Neurologist has ALWAYS insisted that my main problem was conversion and that for example, "You will see as nothing will show up on your MRI" (My MRI shows I have a spine which is demylinating), then "Nothing will show up on your nerve conduction, and all that dropping of things and limited hand use and foot and leg numbness is a product of conversion disorder....which isn't your fault, and can be treated in the psych unit" (then the conduction test showed results that were consistant to exactly everything I was saying) - so now it is her mentor saying "Yes you have autonomic failure, yes you have all the nerve damage BUT you still also have conversion disorder and THAT is what we should focus treatment on." Errrrr......what universe is this again, is this bizarro world?

Linda likes your "Get Elizabeth to the States Fund" (becuase she lost a vacation day and $400 getting TODAY's result).

Tammy: Hey, as Linda says, if it was "sibling love" it would have shown up BEFORE now with issues, no?

Yeah, the whole, "Here get a second opinion.....from the doctor who taught me how to diagnose Conversion Disorder...and I'll send her all the reasons how I followed her techniques in discovering you have it" Real professional!

Look, I know that conversion disorder happens and I was open to that, but when my HEART doesn't beat and my LUNGS can't convert oxygen....well, as I said (to both Neurologists), "If you REALLY believe then give me a TREADMILL TEST, and if I not unconscious or dead 10 minutes later, then you treat the conversion disorder, but if I AM unconscious or dead, then you are stripped of your medical licences.......are you interested?" Neither were. Odd for people so sure to risk SOMEONE ELSES LIFE on such a diagnosis - I am willing to put my life against thier diplomas. A fair exchange (also, Conversion CANNOT exist in an autonomic aspect like blood pressure, oxygen conversion, vascular-dialation - although some "Conversion Experts" want Heart Attacks and Strokes under the Conversion disorder classification (person is Type A personality thus more likely to have a heart attack - that is the mind making the person HAVE a heart attack) - luckily they are not having much success.

Lene: See, one way or another it is all in my head. I was going to try and talk to you because this woman ADMITTED that MS and RA were considered "conversion disorders" in the past and yet bulled on. "Dicey" results indeed!

SharonMV: I think that is a great idea and I would definately want a doctor who would look at the conduction tests so far, do an idependant diagnosis (I mean, the RECEPTIONIST could tell I was heat intolerant and had Reynauds), and would be willing to try treating me or ordering treatment of IVIG in conjuction with a Canadian Hospital.

Linda agrees with you - that a) either they KNOW what I have is untreatable or are unwilling or b) they are SO obsessed about diagnosis they could care less about treatment.

Dr. Mezei didn't say I didn't have MSA, she just HOPES that all the stars align just right and IF A then IF B and then IF C and then IF D - it COULD be something that ISN'T MSA. Well, yes, OR we could go with what is staring us in the face? The thing Dr. Mezei keeps mentioning she is trying to hope it isn't....

Well, this doctor failed in her do no harm, also she never bothered to finish the hands on aspect of the test nor listened to Linda or I (would discount whole things like heart erratics as 'subjective' becuase they didn't fit what she wanted to know) - if you know some doctors who give a damn AND know medicine, please, let me at them.

Cheryl: see, I knew that would piss you off, I was just spreading the pain - and since she says I only THINK I have heat intolerance, then sorry, I guess you and maggie must be pretty darn bad at your training....or is there ANOTHER possibility?

Donimo: if you have the names of good people, people who are not Mezei or Stozel then please, pass them on as we need to see a real neurologist who is interested in real quality of life issues - when I said my number one quality of life issue is heat intolerance, then hypersomnia (sleeping so much), then chest pain, then muscle and nerve pain, then TIA's, then loss of nerve and she decides to improve my quality of life by focusing on BALANCE....?

It is okay, thanks Donimo, it is just we have heard the variation so often and to pay the price (literally), and get a higher version of crap with no usable results and "Dr. Atwell-pope will see you in several months" - well la de fucking da - Or rather, if these are the neurologists you are filling the province with Dr. Mezei - for GOD'S SAKE STOP TEACHING!!!!! No wonder there is a 12 month waiting list to get into the Neuropsych department.

Neil said...

You mean it's just a case of the vapours? Or did we all overdo the good thoughts?

Sorry Beth, I'm so totally stunned that I don't know what to say. Except that I'm ready to mail you whatever I can afford to help get you to a real doctor. Sorry that it won't be much, but I'll do what I can.

I'm still here, you two, and still reading, crying with frustration on your behalf, and still sending hugs and positive energy.

I could recommend some good reading to your neurologists: your own blog explains quite clearly how you're, um, progressing. WITH photos!!! And it's entertaining too, when the readers get all exercised like this.

"Are your parents related?" indeed. "Yes, but only by marriage."

Love and consoling hugs to you and Linda. And I hope you can get some sleep tonight. Ideally both of you.

Raccoon said...

I'm not sure whether to laugh or to be angry at the doctor & technicians.

Down here in the states... presumably you have a doctor or series of doctors in mind?

Get copies of your records. Printouts of your blogs discussing all of these things that "are only in your mind."

Then talk to these doctors. Find out if your insurance will cover anything.

Heh. You already know to do all of this, so why am I stating the obvious?

Elizabeth McClung said...

Lene: well that's pretty much how I felt too, like, "Why do I keep warning them to step back when they put the needle in?" I took boxing...use it!

Tokah: thanks, I think, I hope that almost ANY neurologist is a step up, but then again, I did get doctor death as my GP when I changed from incompetent GP (Dr. Death used to not treat me and instead say every visit, "We all have to accept that our time is finite" and things like that. Cheery!).

Frida: No, but I REALLY want your nice doctor! Yes, I am ready to get a "objective opinion" instead of another sucker punch. And yeah, it does seem like a LOT of zebras and you know, I would be HAPPY to have conversion disorder, but you can't use CBT to change an erratic heart, or help my one lung work to get the oxygen to my body, or heal my extremities, or .......

Maggie: I figured if I felt the pain, I should drag you in too (becuase in calling me delusional and incompetent to accept advice, she is thus impuning all the people who made diagnosis or provided information isn't she?). And yes, why do I attract these people - and how does someone who ADMITS MS used to be considered conversion disorder STICK with that? Oh wait, because they never make mistakes? Not like the last three generations of nuerologists?

Well, at least now I have a topic in case there is another family dinner, "By the way mom and dad, my doctors want to know...."

Neil: Thanks and I appreciate it but we are doing okay I think we our "forensic accountant" in getting some of the medical costs back and seriously PLEASE do not send me money, I KNOW that every person out there has things like medical issues (expensive), families (expensive) and other things that need taking care of. If after all that, find someone close by and make a difference; we will find a way, I appreciate it but it would not be proper to use this blog in that way - I could get advertising on this blog quite easily (I get the damn emails every day), I just want this to be a place where people come, read, are amused or whatever emotion, feel they can participate in the comments. A good fun place, as much as terminal girl central can be!

Yes, good point about using the videos or photos with the "second opinion" neurologist.

Raccoon: Actually, no, this is ALL good stuff - remember, 9 years on NHS and now BC medical so I have no idea what to take to rational pay-as-you go professionals. So I can take all the tips I can get!

And I have heard the BC medical will pay part of it, I need to check out how to get that approved. Thanks.

em said...

I'm shocked. I'm horrified. I can't believe you are being treated like this. I'm so, so, sorry.

Miss Fairy Sparkle said...

When I first got ill, I went from walking, dancing, studying, to not able to go further than 50 yards on foot, in 6 months. The neurologist I saw wrote to me after I'd been admitted for tests and told me I should be greatful that I was well. He made me hop in front of a student, and told me he could prove my legs were fine. I have now been thrown out of three neurologists offices, after been given tentative diagnosises, that they then said, oh, no, couldn't be possible. One nuerologist told me I would be well in three years. I have been shouted at in the epilepsy clinic for collapsing in their clinic and told to get off the floor. I was taken to see psychologists - who couldn't find a thing wrong. I was told by a gp if I had conversion/hysteria - then there was no cure anyway. When you have inconsistent sypmtoms - ones where they go how come you can do this, but not this - they hate it. They hate contradicting other doctors. Challenge a neurologist and you are a pariah in the system. Tests are their final diagnistic tool - doesn't matter if anomoly's turn up, or odd symptoms that can be observed if not measured. It doesn't fit their theory - it doesn't fit their thinking.
What scares me - is their belief their tests are finite. Many illnesses cannot be diagnosed yet - we don't have the equipment. The body can sometimes compensate so well that it doesn't show the true extent of where it is not functioning.
I know what treats my symptoms - I know how ill I feel every day. I know that I will be affected for the rest of my life. Technically - I have no true diagnosis - and I had to keep fighting to get anything treated whatsoever. I also had to learn not to bother them with sypmtoms no matter how debilitating they were.
You are not alone - you will feel naked inside and fed up of trying to prove you really are not well thank you.
What makes me so sad - is I found ways of treating symptoms I was told were impossible to treat - and not one dr is interested in learning how I did it.
Are you getting B12 injections at all - I get them weekly. Totally unscientific -my blood levels are off the scale. B12 is a huge booster - and I now have a gp kind enough to ignore how unorthodox the treatment is.

Evil Lunch Lady said...

"8) Finally, it isn’t as funny as it would seem when you are asked in all seriousness during a neuro exam “So are your parents related? Like perhaps cousins or …..” (as in, did INCEST and inbreeding do this to you?)."

What the FUCK???

Maybe comming down here would help, you'd see doctor's possibly faster. But it would be VERY expensive. You'd be able to pick and choose who you want. It's not heaven, but it may help.

Lisa Harney said...

This is the kind of treatment I have nightmares about.

Why are they so invested in diagnosing you as having conversion disorder? What do they gain? What is the resistance to acknowledging you have MSA, that you have peripheral and central problems? It's almost like cherry picking a cheaper diagnosis.

This is completely unprofessional, and if that's the way they treat patients, they shouldn't even be practicing.

On money: Have you considered putting up a paypal button? I know it won't be easy to get the money you'd need to come to the US to get IVIG or whatever, but it couldn't hurt.

FridaWrites said...

Videos and photos are great--I started doing that with serious allergic reactions that aren't easily replicated (and that one doesn't want to replicate!) for my son and once for me, and the doctor was really appreciative.

Also, in the U.S. you have legal access to all your medical records, and this would include actual tests, not just the doctors' interpretation of the tests. I don't know if that's the same in Canada or not. Wow, she shouldn't be practicing. I don't know if there's a way to report her or that you should expend your precious energies doing so (no TIA!!). I wish I were in your area to make some medical (and insurance)phone calls and paperwork or help out with some of the logistics. That's what they should get medical students to volunteer to do when they have their view-of-patient- life curricula (at some med schools, this involves going to doctors' appointments, tests, and therapies over a number of weeks with a single patient).

Hala said...

You are living my worst fear right now, sweetheart. If it's any consolation, which I'm aware it totally isn't, you're far from the first story of this sort I've heard--it happens in the MS world fairly often (you know, because we have MS AND conversion disorder when we get worse in ways that can't be completely pinpointed lesion for lesion) and I'm utterly freaked that it's going to happen to me.

There's not much I can say. This is fucking horrifying. I mean, a part of me wants to say "Yay! Maybe's Elizabeth's NOT dying! Maybe she can have therapy and it will all be better!" Let's face it, YOU would love to have conversion disorder, LINDA would love you to have conversion disorder, a HUGE CHUNK OF THE DISABILITY BLOGOSPHERE would thrilled it you, hell, if ALL OF US had conversion disorder, right? Conversion disorder for everyone!

Assholes.

Gaina said...

These doctors sound like they haven't got a friggin' clue and they don't have the guts to say 'We don't know, so lets find someone who does'.

Is there anyone else in Canada or over the border who might be able to help, like someone doing cutting-edge research?

I think I'd be asking to change my doctor - as is your right!

sarah said...

totally bronze.
seems to be that everything is well documented and you shouldn't have to be subjected to useless tests anymore to get a second opinion. all they need is a copy of your file and a phone, seriously.
neurologist = brain plumber

Neil said...

Good morning, I hope, gorgeous goth girl. Please note that I did say "whatever I can afford." It wouldn't be much, I'm afraid.... But don't worry; I won't do anything rash.

My wife was as shocked as the rest of us when I told her the neurologist actually asked if your parents are related. Then she looked innocent and said "No, doctor. Are yours?"

Time travel must be possible; your neurologist is obviously from a previous century.

Veralidaine said...

This is one of those days when I read your blog and have to step away from my desk for a moment and look at my bookshelf and think, "How is it that this real person who I care about has daily life events more ridiculous, shocking, and unbelievable than anything in my collection of fiction?"

I love Roald Dahl (his short stories for adults) because when you think things cannot get any sillier or more twisted, they do. It's not quite so much fun when it happens to a real person that I know.

I think that neurologist should be sent to the remotest part of the Sahara to live happily in harmony with her herd of zebras, far away from any humans to accuse of being inbred head cases!

rachelcreative said...

Gobsmacked once again. Do you get to NOT see her or her minions any more? Seems a bit fat waste of time and money.

I hope that the physical price is not high for the appointment, needles, testing and hopping - not to mention freaking steam coming out of your ears dealing with a wonky brained neurologist.

I'd encourage you to focus on letting go of the crap today and look at complaint letters tomorrow - think brain as pressure cooker.

But you probably want to kick her arse while you can eh?

Thinking of you both.

Penny L. Richards said...

"Finally, it isn’t as funny as it would seem when you are asked in all seriousness during a neuro exam “So are your parents related? Like perhaps cousins or …..” (as in, did INCEST and inbreeding do this to you?)."

Isn't that the truth? The day after my son was born and still a "medical mystery", a genetics fellow showed up in my room to ask my husband and me if WE were related--and she did it with a gleam in her eye, expectation in her voice, kinda hoping we were, because that would make a really cool journal article, and hey! we were in the South, so obviously the chances must be good... I still can't believe she couldn't hide her hopefulness about finding consanguinity a little better, while talking to terrified new parents she'd never met before.

And I can't believe the specialist you just talked to couldn't hide her casual dismissal of your life-or-death health concerns better, either. "Callous" doesn't begin to cover this.

Elizabeth McClung said...

Em: Well, I was a little "ug" punch drunk yesterday and now that I am on pain killers from all the spasms the nerve conduction gave me I am like, "Hmmmm, not do that soon" - thanks for your caring. Truth be told if I just went "uh huh" instead of "Wait a minute, isn't 'conversion disorder' also what they used to label MS and CFS?" I would be out of there in an hour instead of 2.5 hours. But I have found certain specialists can't walk away (and certain patients *ME* can't either).

Miss Fairy Sparkle: Well, luckily I met a doctor in ER who told me straight out that my condition and manifestation was so rare that in the end, only I would really know how to treat myself and they could at best assist (When your arms and legs are purple and the machine on your bed is beeping because your Oxygen levels are below 88% and your heart is erratic every few seconds it is hard not to say SOMETHING isn't going on - but it took a year of rapid degeneration to get to that point) - so what I am saying is, I agree, and yes, you know what works and what doesn't and sometimes I ask a GP why, and we try to come up with some idea of what is going on inside so that I might try a few other treatments if things get worse. But even in established diseases there are presentations that take 5-8 years to diagnose (oh joy) - for example Multiple System Atrophy went a year or two ago from ONE to THREE MSA-p, MSA-c and MSA-a? - and a film on May 31st shows a man in his 40's dying of MSA ("Impossible, wrong age group" neuros would say - well a documentary of dying is rather stiff evidence). So I won't give up on treating myself or doing what I know is best and not waiting for the doctors who are at best six months behind where I actually am in health if you won't: deal? (I take B-12 sublinqually due to needle issues, journal articles rate it as the same in value)

Lisa: I am flummoxed too - I mean, why don't we do a double - admit that I seem to have MSA/autonomic failure and THEN try these "If all these six things line up, you might maybe have some treatment" - at least then we can examine where I AM, instead of constantly trying to deny or exclude evidence.

I like to think since people pay for computers and internet that if they choose to spend their time here, I am already getting value for money - but I guess I could sell of some copies of Zed (one price if you want it signed, another if you want it signed in blood, a third if you want it signed in HUMAN blood, and a fourth if it is supposed to be mine! - my blood is hard to get, I said to linda, "we could go to the praries and REALLY frustrate some mosiqitoes (sic)"

Frida: yes, it is strange how doctors think that see you 4 hours after you get up will show the same level of symptoms as you present at the end of the day, or after a very exhausting day. So I will get Linda to take more pics and movies. Though she is more like, "Breathe...." or "Are you there.....can you hear me?" or "Blink if you can understand me."

I do wish we could get all meds students, have them wear weights for 24/7 to replicate fatigue and THEN send them to endless tests for a week.

Hala: I totally understand, it is my greatest fear too that everyone will turn around and do the, "Well you can't help that you are doing this to yourself" thing - and when they do, it just shakes everything you KNOW and have seen and lived through - and they have decided it in what, 12 minutes? Yes, I guess it wasn't long ago that like secondary progressives were thought to be making it up as they were not having remissions and ALL MS people have remissions, etc. Sigh - why, when we have to fight our OWN baggage about being disabled mentally do our doctors want to give us thiers too - This is why the whole "You have Stress Conversion Disorder" puzzled me, I mean my Neuro here told me "Don't look for a job, just lie in bed" - if I did that, what stress would I have exactly, but if I did that, and she was WRONG, then I just blew the biggest "use it or lose it" window - the one I used to go to Japan, which was NOT lying in bed all day.

Yeah, the first time I went in, I said, "I don't have CFS" becuase I was terrified that they would label me with CFS and I would be unable to explain what was going on to anyone. The last two times I said, "Hey, can we revisit that CFS thing, what if it is that?" - and she shakes her head - yeah, I could deal with conversion disorder, let's all have conversion disorder and stop having to take these pain pills and getting horrid reactions like you did and that. Seriously, only an able bodied person could consider a theory that someone with a fatigue/pain related fluxuating disability who has to live that 24/7, who stares up at the ceiling groaning and writhing waiting for the pain killer to kick in, that we would someone WISH this on ourselves.

Gaina: My GP is in Mexico helping people who can't afford care (see why I like him), so when he gets back we are going to have some strategy sessions. But yeah, the "I don't know" or "I was wrong earlier" doesn't seem to go with specialists - I wonder, do they get a special operation like a labotomy which removes thier ability to say it?

Sarah: I agree, very bronze and I agree that this test and visit was a time waster, and I only went becuase I wanted that "impartial second opinion" - which turned out to be "fooled ya" - until they can demonstrate that a test will lead to a) a prescription for treatment or b) a clear set of possibilities for future progression of the disease then, while I might be of interest to them, they have yet to interest me. So, I will maybe have to pay and then find a neuro who realizes that I am the customer and am ordering a "test assessment and second opinion please....and can I get fries with that?"

Neil: Good morning/afternoon biker dude! Well, you are a free individual but maybe you should hold off until we figure out if we are going to Seattle, Chicago, Vancouver or Sask.

What is scary is this Neurologist thinks she is "cutting edge" she thinks that "conversion disorder" is a misunderstood condition which can explain a LOT which neurology currently cannot (because...gee, the brain is REALLY complicated?).

As Linda said, if you were INBRED, wouldn't if have sort of showed up before now? Errr.....thanks Linda I'm not sure if that was support or a slap down?

Veralidaine: Well, I have found in medico world, often behavoir unacceptable elsewhere is totally accepted (like repeatedly zapping a person while talking about them like a sack of potatoes and doing it over and over to try and get the result they WANTED - yes, COMPLETELY removed from things like Human experiments). And besides, Dr. M. is going to make a GREAT character in a book, and I think her phobia is being put inside a box (aka loss of control). Though being contradicted seemed to be high up there, hmmm, what happens when two A type personalities meet: stand back!

RachelCreative: Not seeing her, not seeing her minions, not a problem or as my GP so eloquently put it, "Fucking specialists!" (see why I like him, I trust a man who gets frustrated with bullshit).

Way too in pain from the tests to get a letter going, I am going to wait for my GP, get her referral letter and the test results (get him to pester her for them and THEN act) - I have learned, get what you want and THEN stick it to them. Plus, while she is off doing what she does, I have a wonky heart because a lot of electricity kind of messes up my beats - we have noticed this before and called it, "the crash" - which is about 24 hours long, while the three hours after the test where I talk and feel great because of all the endorphines is called, "The Buzz".

Thanks, I am thinking of you too, this just reminded me of why I don't see specialists (I see another next week.....oh joy!)

Penny L. Richards: Wow, and I was just reading you have 400 blogroll emails so wow!

Yeah, it is kind of a dinner party or drinking joke until you actually HAVE a medical mystery that NEEDS solving and someone asks you in all seriousness if your mother slept with her brother or father. Wha? You could do a DNA swab of my cheek if you really cared and not ask me a question that quite honestly, even if I said YES, what difference would it make - would they then KNOW what it was? I am really sorry that experience happened to you - I know that doctors sometimes seem to forget they are talking to humans, just like them, and after talking to many specialists, I tend to forget they aren't robots programmed for global confusion and destruction.

Yeah, it was kind of well, I wouldn't use empathy, compassion or caring as words that were important to her - being accepted completely as correct, now THAT was important. Haha - sorry, it is just a day later, it seems more funny, maybe that is the pain meds?

SharonMV said...

Hope the pain & everything from the tests & the whole experience won't last too long.
I see my internist for most of my care. I have reason enough from past experiences to distrust & want to avoid specialists. My rheumy is nice & very smart, he's just not being very much help right now. I hope I'll soon be done with the ortho (no more exploding tendons please). I just saw the pulmonary doc & he actually knew what CVID is and also is my internist's husband. But I had to wait about an hour & a half to see him on a very hot day & was to tired & nearly inchoherant to talk to him by the time he saw me. So, I'll be keeping appointments with him to a minimum. Also have to find a gastro doc & a neurologist (ick!). And will probably have to go up to UCLA to find another immunologist since the one who diagnosed me threw me by the wayside. And I'll have to see an endocrinologist at some point for the adrenal insufficiency (right now my internist & I are just treating it ourselves). But it's a lot better going to the specialists now that I have CVID & lupus diagnosed. It was pure hell when I first became ill & for several years after.

It is true, that we have to learn how to treat ourselves. but even though CVID is rare, there is an online support group. I learned so much from other people - even though the disease is variable (Common Variable Immune Deficiency). I wish there were some way for you to have this benefit. Lupus is another disease that really varies from person to person. Unfortunately a lot of people have it, so you can learn on support sites about weird things & symptoms that the docs don't even talk about.

But you have to have at least one doctor that will help. I'm glad your GP is good & that the ER docs helped too. I only hope that you can find a decent neuro to help you. In fact I asked my internist to test me for the adrenal thing & she started saying all the stuff about me that didn't fit the picture (doctor habits die hard). But she did test me, and didn't try to discount the results and she agreed to start treating me. And she also told me to explain to the rheumatologist how I'm doing - try to get him to come up with more to help me.
Sharon

Sharon

em said...

Yes Elizabeth, you and I and apparently specialists share that inability to just walk away. But I'm glad that you threw their inadequacy in their faces. What they are doing (and God! it is horrible to hear that it is fairly standard operating procedure in the field) to you is unforgivable. I swear if I lived closer I would come scream at them myself.

Tom P. said...

Beth - You may want to contact someone in the Movement Disorder Clinic at Johns Hopkins Hospital in Baltimore. They are doing research on Ataxia which includes MSA. Your condition is rare and Johns Hopkins is a research hospital so perhaps you can work out some way to reduce the costs. At the least, they may be able to recommend a doctor in Canada for you.

saraarts said...

Aw, shit.

"And we feel like shit, we hate doctors, we hate doctors who torture us and then tell us it is all our fault, or that it isn’t our fault but that they aren’t going to DO anything for months to years, when we may only have months or a year."

Oh, gad, I am so there. I mean, without being anywhere near as impaired by illness as you, and not as out-and-out ill yet, either (though I really do seem to have an awful lot of incurable cancer just now), I am so there.

I am trying to make appointments to get myself more fully disabled than I already am for at least a month, maybe longer, by surgery to remove at least the biggest of the tumors, all in a Boston teaching hospital I swore I would never set foot in again, but everyone out here in the suburbs is scared to lay a scalpel on me. And it is not going quickly, and I am suffering, and the tumors are growing and spreading and stabbing me with pain and making me not really want very much food and not sure whether I can even hold down what I eat, and I am going to suffer a lot more in the immediate future if I do get what I "want" from a palette of bad choices. And I often wonder why I am doing this to myself, why I don't just let it all go. But I keep hoping someone will tell me something I don't know, something both hopeful and true. And meanwhile, I love and am loved and can't just leave 'cause it's hard, so I actually do know the answer, but I ask myself anyway.

But the wait alone is making me sick. And I fucking hate doctors who don't get it, whether they're yours, mine, or anyone else's.