Oh, Deb, I thought THAT was you. MUST you pick battles EVERYWHERE you go??? This is such a lovely place -- such a nice group of people. We can all see that you are very, very smart -- can't you just leave it at that -- and NOT start throwing things around???

Alice, As I see it, just to clarify, you are posting to ask advice from a patient's perspective. You are not actually giving medical advice but gathering thoughts to help us and doctors. AND you are pulling together professionals like neurologists and pulmonologists to help, right? I can only imagine that you will have an "editor" as well.

Deb, I do appreciate the specific input you have pulled together. You used to be a nurse, right? So that input is useful.

I'm not any kind of medical professional, so all I can do is give my input from a patient's perspective. I think ALL perspectives and experiences are useful.

In debating any issue, you don't have to tear someone apart personally to tear apart their reasoning or to do a little editing. Or while giving a little input. That is my perspective as the daughter of an award-winning debate coach (and English teacher). I would hate to see this conversation become nasty. And, no, I'm not saying that was your intention, Deb. I'm simply stating my preference for how to discuss all this.

No one is perfect but the intent in this post is pretty darn close. Wanting to do something for MG patients, by anyone, is fantastic. I don't know the "forum rules" for doing this kind of thing but I would think it would be okay.

Doctors should be specific when it comes to this issue. Even then, there are personal preferences as to HOW each of us wants to "doctor." I know my pulmonologist and how she works and do not feel it's necessary to go to my neurologist first, nor does my neurologist feel it's necessary. They trust each other. And they keep each other in the loop, via me and faxing of notes/test results. That's my preference and it works for me. So even if Alice and her colleagues come up with a pamphlet on MG, it's up to each of us to take care of our own health.

I sure as hell would've liked it if the neurologists "caring" for me during my crisis had followed some kind of standard, like putting me in the ICU to be monitored, so I didn't have yet another medical experience where I felt traumatized. Standardized care works more often than not as long as it's sensible and the patient's health is of upmost concern.

And even after graduating from medical school and being residents, doctors are not Gods. They don't always know everything, especially not odd little diseases like MG. There are usually only a couple pages on it in medical books, even in neurology textbooks. So trying to "re-educate" doctors is a very good idea. It's better than doctors inadvertently killing us due to ignorance.

Annie

thanks everyone for your replies.

first, I have to give proper credit, to the captain of this ship, who has been working with me on this- a person by the name of Moshe Pick-who has dedicagted his life to help and improve MG patient care around the world.

second, I do not think any physician who gives general advice on the internet is liable for anything. there are many physicians that answer questions on the internet in their own field of practice, some much more inaccurate then what I have written here, and as there is always a dissclaimer saying that you should not do anything without consulting your doctor they are not considered liable.

I have said quite a few time, that it is irresponsible to give personal medical advice to people without taking a full history and doing a physical examination etc.

third, I will be glad if anyone wants to edit this, improve the grammer or what ever. my english may be less good then yours, and you are right physicians are not very good writers, and sometimes reading patient's charts and seeing the way we write, you would think that it was someone in kindergarten.

fourth, this is and was not intended at this moment to be a guide or advice to anyone, it was a draft based on information we collected from various sources. it was mostly meant to increase the awareness of patients and neurologists to the exsistence of respiratory problems in MG.

fifth, you may be right that it has to be re-written, so that there will be a seperate guide for patients, possibly written in a more lay person wording, and one for neurologists. it is definitely not meant for pulmonologists, and does not go into all the details of how the tests should be done. we assume that the patient will be reffered to a pulmonlogist who knows those things better then we do.

as to stressing the possible inaccuracy of those tests. this is the reality. there are some tests in medicine that have a very small error margin and others that have a larger one. that is why a non-experienced pulmonologist who does only part of those tests, does not repeat or follow up on them, can easily go wrong.

sixth, we deliberately did not use the word crisis and did not go into the managment of crisis. most neurologist use this word as a "magic" / mystical word. they all know that patients with MG can go into acute respiratory failure, and require intubation. most of them see it, as some unpredictable disaster that happens with no warning signs. but this is not the case. very rarely do patients go into crisis unexpectedly. most have respiratory symtpoms or various degrees prior to that. symtpoms that are atributed to anxiety, fatigue, depression etc.

we want to increase the awareness to such symptoms.

and as I have said this is just a draft, and we wanted to see if it worthwhile to continue with this initiative or should we just let things be as they are, where patients with significant respiratory symptoms are constantly "blown off" as having emotional problems etc.

and last but not least-as to malpractice suites- this in my oppinion is one of the saddest things that happened to modern medicine. it not only increased the economic burden significantly, it also led to the gradual loss of true partnership among physicians and patients. instead of seeing the person in need, the patient is seen as a potential rival in court. many needless tests are done in order to "cover your ***". quite a few physicians are ready to jeopardize their patient's well being and not do what they think is right, so that no one will blame them for not going by the book.

there are many studies that showed that patients are ready to forgive their physicians for even serious medical errors, as long as those are acknowledged and proper care is instituted to avoid further damage, but they are not ready to forgive disrespect, lack or care and indiference.

alice.

Alice,

I applaud your effort on this and wholeheartedly thank you for taking a point position to make a difference. But what I loved most was your last paragraph. How can we get back to reasonable, non-threatening, non-adversarial relationships? (she asked rhetorically). Seems there are pros and cons of our 'speciallized' medical care...I just wished we all remembered to people first and titles second.

Thanks again, Alice.

Sue

there are a few specific points that you mentioned that I thought were very important to clarify.

1. Monitoring of CO2 levels during a sleep study is not the standard of care either. It has to be ordered specifically and the indicators clearly delineated.

this is true, and that is why it was stressed, as a patient with a neuromuscular disorder and significant respriatory muscle weakness may appear to have a normal sleep study, if CO2 is not measured.
it is not an invasive test, as you can measure CO2 just like you can measure O2. the equipment for this is not standard and quite expensive, and therefore may not be available in every sleep lab. we wanted patients with MG who have the symptoms we mentioned to insist on having the proper tests, and not be ready to accept being told that their sleep study is normal, just because their O2 sats were OK.

2. After vaguely alluding to the urgency of this issue you proceed to tell the patient to lay down and relax.

one of the problems with the managment of respiratory problems in MG nowdays, is that it is seen as matter of extreme- either you are about to go into acute respiratory failure or you have "nothing" and all your symptoms are explained by "something else".

not every respiratory distress is an emergency that should be evaluated immediately. if a patient with a known neuromuscular disorder has some mild shortness of breath when walking, which resolves upon rest, or any or the other symtpoms we mentioned those are not an emergency. in fact most likely if such a patient will come to the ER, he/she will be told after a brief evaluation that it is due to "stress"., and no proper evaluation will be done to adress it further.

3. Again, point of standard of care--a respiratory therapist does not use one single effort when performing these tests. The standard of care is the average of a minimum of three efforts.

you are wrong, the standard of care if the best of three efforts, and most respiratory therapists will not take notice of the fact that with repeat efforts the numbers go down, and will take the first (best one) as the result.

4. PFT= pulmonary function tests, and it includes all the tests that are meant to assess pulmonary function. I assume that what you are referring to is standard spirometry/ flow volume loop, and this is mentioned, but possibly not clearly enough.


last but not least.

I do appreciate the effort you put into this. and as my english was learned as a physician, it may be a bit akward, and I will be glad if you can translate it to more "true english" that can be better understood by everyone.

I will be very glad if you will be ready to help in this initiative, as possibly together we can do something so that there will be less patients that have to experience those traumatic encounters, like bluesky, and others I have met in real life and cyberspace.

alice

great idea. you are probably right that a CD or DVD may be better then written material.

I know that there is still a lot of work to be done on this. as I said this is just a draft, and sort of throwing it to see what you think about it.

I think that the more patients and neuros that we can get involved and interested in this, the better.

thanks,

alice

I have been thinking it over.

I am a highly respected physician. despite significant dissabilities, I continue to have the full respect of my patients and co-workers.

I do not know how true what you are saying is, but I definitely am not interested in anyone sueing me just because I tried to help other patients, not to go through what I have been through.

and therefore I have deleted this post and will no longer post on this forum.

all the best,

alice.

Its a sad day when someone who has given so much to a forum is hounded out by someone negative towards ideas to improve patient care.

Your idea Alice to help other MG patients was a courageous one and you being a dr with MG were in the best place to be able to help others.

Advice is what this forum is about, a lot of advice that is given here is by lay people who use their experience to help others. Your advice came from a medical background and you could explain procedures and processes that some of us just didn't get.

Its a sad day when such a courageous effort is written off like that.

I would like to intervene here to comment that this is first and foremost a self help support community

Alice, please do not let yourself be intimidated here. You are a valued member and you have not violated any of our guidelines.

However, the other poster has and so has been edited. We do not allow threats and flame posting here. Period!

We have a disclaimer here on all of Neurotalk pages
in that light, no posting here is considered "medical advice" nomatter the qualifications of the poster.

Alice, I do hope you will reconsider your decision and will stay on. You are a welcome member of this community

ps here are our guidelines for anyone who needs to read them
http://neurotalk.psychcentral.com/showthread.php?t=1293

as well as our Terms of Use
http://psychcentral.com/about/terms.htm