Words with my neurodoc
 

Well things didn't go extraordinarily well with my neurologist today.

He asked me how things were going and I told him.

"Poorly. I think. Because not only do I not know what to expect because you haven't told me - for instance, the heat will exacerbate MG, and so I've had to discover this on my own and not know whether to attribute it to heat or something else; but I don't know what the new normal is."

Then he rolled his eyes and got that smug look on his face that likes to land there. So I asked him about it.

"Do you have a neurological condition yourself?" I asked.
"No," he said, in a perfect rendition of a defensive tone of voice, "why?"
"Because you roll your eyes at me a lot when I'm asking you questions and I was curious if some physical condition caused it or it was arrogance."

THAT went over well.

"I studied and worked at Duke where we had 600 MG patients..." It went on for a while - be glad for ellipsis. Then it was my turn. I'm not going to spare you the ellipsis - sorry.

"My turn. I speak five languages. I have degree's in mathematics and physics and graduated summa cum laude. A freshman project I turned in was commandeered by the Pentagon and I did a stint as a consultant for them. I was published in a mathematical journal as a sophomore. I've had two books published. I have been asked to give presentations to both the FBI and the APA, ironically on reading body language. I am also a member of Mensa.

"If you can't speak to me without speaking down to me, then please send in your nurse and have her talk to me."

First time I wasn't told to make a follow-up appointment. Hmm... wonder what that's about? ;)

Oh well.

Well, I wouldn't normally suggest getting into a pissing contest with your neuro, but, as pissing contests go, that certainly has to be one of the best! ;) At least that I can tell given the insufficient data.

Mensa, huh? Show off.

I totally understand being disgusted with the childish mannerisms that some neurologists don to hide their insecurities, for I've had one or two of them as well. But, as with any controlling personality (who is essentially insecure), you're often damned if you do and damned if you don't. They enjoy putting others/patients down because it's the only way they can feel good about themselves. Nothing anyone says or does will ever change that, unfortunately.

Now . . . tell me more about the theft of your property. :cool: Doesn't our government steal everything anyway?

You should probably find a neuro who respects patients, no matter their IQ or level of education. But do they exist?

The only one I personally know of is in Florida. Way too hot down there. And sinking fast.

I kid, but it's not really funny, is it? All we want is to be heard, to be helped, and to be respected. How hard could that possibly be?

Annie

OH MY GOSH!! You are my HERO!! It has been so painfully obvious to me when neurodocs have acted like I am making up my symptoms and both doctors at Chapel Hill and Duke started the visit with that look on their face and the question "So..why are you here???" After my Single Fiber test at Chapel Hill the doctor quickly whisked me out the door and never even bothered to call to give me the results of the test. Can you tell that I am bitter? I applaud you for speaking out and calling out that doctor on their attitude. BRAVO!!

I'm a Mensan too....

Hi Annie,

Well, it really wasn't actually meant to be a pissing contest... really.

Tone of voice doesn't translate well in type, but my tone of voice was pleasant the whole time - like I was comparing my recipe for chocolate cookies with his recipe for chocolate chip cookies, trying only to alert him to the fact that we didn't need to stop to describe what 'flour' was to me.

I was aware of his insecurities, as he wears them on his sleeve - and had I thought about it a bit more, I would have modified the manner of delivering the message as to not trigger them but... and especially with someone who presents themselves as cerebral, I sometimes get into this socially retarded state where I assume that if I just make this logical enough...everyone will understand. Just a blind spot in my social skill set.

The school project was ridiculous actually. CS101 - write a code: i.e. A=Q, B=7, etc. But I'm a math guy. I got creative and used fractals. When it was done, they put it through the Cray computer on campus (which was the sixth largest computer in the world at the time) and tried to break the code. Six months later, some very nice folks (I know cause they told me how nice they were) from Washington showed up and 'borrowed' it to 'study' it.

I've got a good friend, we share a love of Eastern philosophy/religion, who wants to come with me next visit and I'm going to let him. He is retired now (still early 50's) but was the lead ER doc in the same hospital. He's funny...and completely innocent, but when I got diagnosed with MG he was as excited as I'd ever seen him. Never actually saw a case and his childlike curiosity and zeal got the better of his social judgment in that situation,

"Wow, really! MG! Of course though...makes perfect sense! Hmm... let me see, don't tell me...pyrido...pyridostig...pyridostigmine! They still treating it with that? OH! Um...yeah, sorry about that...." I do love him.

Really the talk with the neurodoc was simply based on the fact that I keep doing things that get me into trouble with the MG...because I was never warned. Deciding to rest outside in the sun when it's 100 degree's out because inexplicably, since I came out five minutes ago I feel extraordinarily weak is silly and extremely preventable. Since I was diagnosed two days before our first scheduled 100 degree day, it might have been something to mention.

At the end of the day, I'd be happy with him treating me with the absolutely worst consideration he would accept if another doctor was treating his child.

Really though, beyond the diagnosis...he hasn't done anything for me that I need him for. It's kind of why alienating him isn't as horrible as it might have been. Prescribed me mestinon? Sure, but I could have looked it up and asked my PCP for some - and after he looked it up and realized it was for MG, he would have written it up.

*shrug* It is what it is now. We'll just move forward and see where we end up. :)

I wasn't being critical, but utterly silly! Guys can rib guys, but when a woman does it . . .

I think all of us wish that we could—while we're feeling completely vulnerable and sick—have a retort as splendid as yours.

I've always been pleasant with neurologists as well, when they clearly didn't deserve it. I consider what I went through with many of them to be a medical version of a Kobayashi Maru. ;)

How would you respond to a doctor who kept a positive antibody test from you, which severely affected both your care and your life? And when you found that out seven years later, the clinic denied that it existed? That's only a small bit of what I've gone through.

No doctor told me either that heat made MG worse; only a couple of women on a different forum years ago did that. That's when I did the research in order to figure out WHY (extremes of heat, and cold, increase acetylcholinesterase).

If this neuro can't handle a little debate (much better term than pissing contest, but, again, I was being silly), then he should be required to see a psychiatrist to work on his ego. My dad was a debate coach, so I enjoy a lively conversation. But why should we patients have to go to those lengths to simply have care that we pay for?

There are very few neuros who tell MG patients how to manage MG. The one in Florida goes so far as to have group meetings with MG patients to discuss all things MG. How cool is that?

I honestly don't think many doctors think about their patients. They're thinking about themselves and how to avoid a lawsuit. It's a pretty sick legalistic paradigm they work in. I'm sorry that you were not warned about the MANY things that can make MG worse, such as stress while seeing a doctor.

There is absolutely no excuse for a physician to be a total jerk, or to put down their patient by rolling their eyes, doubling their entendres, ignoring their rights, or destroying their lives. And, yet, they keep on doing that and more.

Even the abduction of your fractal genius was an abuse of power. That's why so many people with gifts keep them quiet, so they won't be on the receiving end of the "robots in black." (It would be an insult to men to call them "men in black.")

There's no place in medicine—or life—for abusive behaviors, no matter how cloaked.

Annie

Very interesting post. As of result of your thread, I am going to start another thread on the subject you brought up. I think it is an important topic. I will post it under General Health forum so ALL may see and not just MG patients.

Thanks so much for your post.

Honestly, didn't take it as critical - would have surprised me but wouldn't have bothered me if I did. :)

Oh. My. Goodness. I KNEW you were a geek! Geek like me even. :)

I think I would be looking for another doctor...in Florida. I'm so sorry that happened to you.

I do not understand this lack of information. For instance, I'm trying to determine why I collapse three hours (almost can set my watch by it) after I take my morning meds. Unfortunately, steroids are in that mix and so I can't sleep - but neither can I hold my head up. So I lay in bed for two to three hours completely awake and unable to push myself off the bed. There may be a simple reason but if this is to be expected, why am I wasting my limited resources trying to document around this when a simple conversation OR EVEN A HANDOUT (not yelling at you).

Very cool indeed. I'm jealous.

Sooner or later I'm going to blog some of my ideas so that someone from another generation can pick them up and run them. No sense letting good idea's go to waste because of a finite life. I have an idea for doubling food production in hydroponic greenhouses by using a photographic filter to filter out the wavelength that tell plants that they need <12 hours of sunlight to produce food. This way, plants could continue the photosynthesis process 24 hours a day. Another idea, I experimented with fiber optics and lit every room in a 2400 sq. ft. home with a 60 watt bulb. It would be nice to see some of these idea's come to fruition even if I personally don't benefit from it.


Annie[/QUOTE]

Love hearing from you Annie, as always.

Angell,

What you have here is modern medical jargon for "Who's The Barber Here!"

Theodoric of York, the medieval barber gives medical treatments and fine haircuts

-Mark-

Transverse Myelitis
 

A friend of my suffers from Transverse Myelitis. He runs a large and complicated business. At one point his doctor order a spinal tap. This is all they told him before the appointment.

After the procedure they informed him that he needed to go home and rest and remain immobile, to avoid a problem with the tap.

Since the doctor's team neglected to inform him of this beforehand, his calendar was full. Now he had to cancel important meeting with short notice, adding stress to his life. He was angry, and with good reason.

My friend said their attitude was: "Well your health is more important!" They took his anger as an argument to return to work faster than medically indicated. His anger was not being told beforehand.

-Mark-

Angell, Okay, I admit it . . . I'm a total geek. A closet one, though. It's not too popular to like quantum physics or Tesla's work or plasma cosmology. And I sometimes refer to my breathing tanking as a core meltdown. ;)

Those are very good ideas. Did you know that plants have feelings? At least that's what studies showed when they hooked them up to a polygraph to see if they reacted when they "felt" threatened. Pretty interesting stuff. I would want to know if plants NEED a rest, like we do.

Did you notice how fiber optics were a big deal in the early 80's and then they disappeared from any news? The energy companies don't like new energy ideas, because they wouldn't make enough money! :cool:

Do you only take MG meds? Are there other meds? There could be an interaction between them and/or any food you're eating. Some drugs do have food cautions (i.e., grapefruit). Are you a restless sleeper? MGers who are more active while sleeping are using their muscles and making them weaker. Could you have sleep apnea? Is it a blood sugar issue? Just throwing ideas out there.

I know you weren't yelling! ;)

That is the one aspect missing from doctoring. Okay, there are a LOT of aspects missing, but this is a key one. Once a patient is diagnosed with a chronic illness, they should be "prescribed" a seminar on it! So many diseases are complex and managing them is not as easy as, "Here's a drug, enjoy your life."

Lupus, for example, often has regular group meetings within HMOs. It seems that the more well-known diseases have that in place, but not MG. MG can kill a patient, or at least mess them and their life up really good. It should be taken more seriously and have a management pamphlet at the very least.

There are some MG meetings around the country, but you'd have to seek them out. How many MG patients fall through the cracks and don't know that hot weather could kill them?

I like the way your mind works, Angell. That's what I love about this forum. The people here are so interesting.

:hug:
Annie

I agree, neurologist's are a different type of doctor. Very few are knowledgeable of MG. Most of them are more interested in themselves, than the patient. Unless you are limited to the availability of Neurologist, find another one. I have had 7 different ones in the past 7 years.

Good luck, and don't give in

Oh Yeah?
 

"I studied and worked at Duke where we had 600 MG patients . . ."

Oh Yeah? . . . . Duke? . . . Never heard of it!

Oh Yeah? . . . . Name one!

Oh Yeah? . . . . How many escaped a Myasthenic Crisis?

Oh Yeah? . . . . Duke? I thought Duke was a penal institution!

Oh Yeah? . . . . You sound like you have the heart of a true healer to me sir!

Oh Yeah? . . . . Only 600?

*admin edit*

Any additions . . . ?

-Mark-

I totally agree. You are my hero also. I will have to remember this on my next appointment.:Bow: