just wanted to say Hi,

wasn't sure how to introduce myself.

if I write about the entire four years or possibly much more, I have been dealing with this illness, it would be a book. ( I am actually in the process of trying to write one).

so I decided to just say the bottom line-

I have a rare form of myasthenic sydrome.

after a fairly long diagnostic process, multiple therapuetic trials, which can all be summarized in a few words- quite an ordeal, I believe I have learned to live with it, reasonably well.

I now have a pretty good team of physicians-pulmonoloigsts, rehab physician, occupational physician, endocrinologist and even a reasonable neurologist.

the md in my name is MD, but not neuro.

my motivation to join your group was to think together about ways in which we can improve the managment of MG patients, worldwide.

because I personally think that there is quite a lot to do....

alice

Hi Alice and welcome.

Its really a great place here, everyone is so supportive and welcoming.
look forward to seeing more of you around here
take care
Kate

Hi Alice and welcome!

Good to have you join us. I agree, alot can be done to improve the management of our disease. I live in a rural area and hardly nobody knows what to do with my disease.

It is great to have a doc on board, you can bring alot to the table here for us. Knowledge is power!

Here's a welcome hug!

JJ

Hi Alice!

And welcome. Look forward to learning more about and from your experiences with MG.

Sue

thank you all for your warm welcome,

I agree that knowledge is power, but many times patients know more then physicians, about their specific disease.

I personally have learned much more from other patients, and other health professionals then from physicians, regarding this illness.

and this has made me ask myself a lot of question about what is happening to modern medicine...

it is true though, that my medical background probably enabled me to have better access to the medical literature, and to various experts (physicians and scientists) around the world.

and I will be more then happy to share this knowledge with you.

but, my current neurologist is a very humble and caring physician, who honestly tells me- taking care of you is like sailing an uncharted sea, but I promise to be honest with you and do my best. and honestly tells me that he, as most neurologists, has very little understanding in respiratory problems, and is quite happy that I have others that take responsibility over that.

and after all I have been through, I could ask for no more, but would not be ready to settle for less.

alice

Hi, Alice. Welcome.

Can you say which myasthenic syndrome you have? Is it the congenital myasthenic syndromes you are referring to? I found out in 2006 that I've had myasthenia my entire life (due to photos, symptoms, misdiagnosed lazy eye, etc.). Anyway, I do have MG antibodies but due to a very long story of a doctoring mess, there isn't anyone to test to see if I have CMS too. There are only two places in the US that can do the specific testing for CMS.

There isn't as much they can do for the myasthenic syndromes.

Have you considered getting a pulmonologist? I have a very good one who helps me when needed and monitors me on a yearly basis. They're the ones who take care of the breathing issues if someone has a crisis anyway, not the neurologists.

I do think it may make some people uncomfortable to have a doctor here but you are a patient too! So if there's anything you need, just ask. I hope you are still able to practice medicine.

Can we improve the management of MG worldwide? Not until the diagnostic process of MG can be improved. And the mistreatment of patients, mainly women, by saying they are only depressed, anxious, have chronic fatigue or other labels to insinuate they are being hypochondriacs. Sorry but that's my honest and learned opinion.

Annie

Well said Annie....especially the last paragraph. I agree.

JJ

wow, Annie, so much information, questions and criticism in one post.

I assume that you probably have the same problem that I do- you appear too "energetic" for this illness.

I am not sure I can respond to all of it at once, so I will start from the bottom.

yes, I agree with you, modern physicians tend to "stigmatize" patients. in a way it is very helpful, because it makes it more efficient, and modern physicians, as opposed to previous generations (and I am talking even 30 years ago), are expected to be efficient. if you have ready made boxes that you can put patients in, then you don't have to "waste" too much precious time. this is very much like any kind of rationing.

also, women's health has been very much neglected for generations. if you think about the word "hysteria" which is the synonym of being emotionally unstable and making a fuss of minor problems, or even the equivalent of conversive disorder, as coined by Freud, comes from the greek word -hystero-which means womb.

ischemic heart disease was considered until about a decade ago, to be a men's disease, and women were thought to be very rarely inflicted by it. we now know that the clinical presentations, and accuracy of diagnostic tests-such as the stress test, in woman are very different.
I myself once pretty much forced an arrogant cardiologist, who still ignored those studies, to take a patient with what I thouhgt were obvious anginal symptoms to the cath. lab. and needless to say, she was taken from there straight to the OR for an emergent bypass surgery.

modern medicine is a very powerful tool and like any powerful tool, can be used wisely to improve the life of people , but can also cause much harm, if not used in that way.

I was very fortunate to work with a wonderful physician in a philadelphia inner city hospital- he was a hematologist that took upon himslef to change the way patients with sickle cell disease were treated.
sickle cell disease is a disease of african americans, and some of them do belong to the lower classes of the society and are drug addicts, but most of them are'n't, but as a major manifestation of this illness is extremely painful crises, that can only be managed with opiates, they would come to the ER in the middle of the night asking for morphium and treated like drug addicts.

this wonderful physician, decided to dedicate some of his time, on a voluntary basis and opened an ambulatory clinic, where he would see them on a regular basis. and when they came to the ER they would have a letter from him, giving very clear orders regarding the medications they should recieve.
I can't say that all the residents changed their approach, but some did.
and no doubt that seeing the way it changed those people's life and their gratitude to him was more rewarding then anything he could have earned in his private clinic during that time.

so, yes, things can be changed, if one puts his/her mind to doing so. probably not in one day, but eventually...

and when you say-Not until the diagnostic process of MG can be improved.
I think it is the question of the egg and the hen, because maybe we, as educated patients, can do something about it, in a positive way.

alice

I'm sorry, Alice, I don't mean to be contrary - just being honest. To me, being a highly educated patient, it is not a chicken-egg issue. There are neurologists out there who are cruel. And I mean denying a patient testing cruel. Denying clinical results cruel. And in cases like that of Rach (sorry, but you're an easy case these days, Rach), they have been completely immoral. Her oxygen stats go so low but they accused her of holding her breath for an oximetry test.

And I've seen doctors say a patient is too educated and should leave the doctoring up to them and then say they aren't educated enough. Blaming patients for their lack of, or too much, education is dangerous. It is the JOB of the doctor to get it right. And to be nice about it all. My auto mechanic doesn't expect me to diagnose what's wrong with my car. I know, not the same thing. But it's not my JOB to be a doctor, nor do I want it to be my job!!!

Doctors do indeed have most, sometimes all, of the power in the patient-doctor relationship. If they decide to have a negative view of their patients, even if it isn't true, the patient is screwed. I've seen it happen over and over again.

So while we as patients have some say in our care, it is ultimately the doctor who "decides" what is going to be done. We can't order tests or write prescriptions, only they do. And once a prejudice is in place that effects the view of a doctor, good luck getting them to change it or admit they were wrong.

I've seen too much doctoring in the past few decades to ever put on rose-colored glasses again. Having said that, I have also had doctors who I've known for decades who are amazing. It's not the good doctors we need to be wary of or to warn patients about.

I'm not putting you personally down by saying this about your profession! Only those particular doctors who don't do right by their patients.

The bottom line here is that YOU need the best care you can and I'm glad you are getting it.

Annie

Annie,

maybe you are right and each of us has to take care of him/her self, and just accept that this is the way it is with this illness, but I still want to believe (and you may think that I am naive), that this can be changed, so that other patients will not have to go through this ordeal.

you are right, I am now recieiving excellent care, but in order to get there I had to fight for four years, and still there are days, when I call my pulmonologist and recieve very reasonable, practical and helpful advice, and I am truly surprised. or when my neurologist says- I have never seen something like that, but not out of disbelief, but as a fact, that I ask myself when is he going to say that this is "impossible".

I do not think that any thing that happened to me was out of cruelty. I think it was a combination of lack of knowledge, missconceptions, over reliance on
diagnostic tests, laziness of thought, fragmenatation, arrogance, etc.

I can tell you, for example, that pulmonologist that do not have a good understanding of neuromuscular disorders, and infer from what they know about asthma and COPD (which are obviously much more common) can make serious judgement and managment errors. and also a lot of them have very little true understanding of non-invasive ventilation, and this is something I have learned the hard way.

alice.