I missed the original suggestion by Alice. Funding for innovative projects can be found. Please point me to the idea.

Thanks

Bill

thanks for your clarrification.

I do not have a problem with someone correcting my grammer or explaining something in a better way, I was just truly concerned that some one may see what I write as "medical advice".

obviously my malpractice insurance is not going to cover something I wrote on the internet, and not in my field of expertise.

I have been trying over the last year to understand why excellent physicians have made serious managment errors in my case, time and again. and why similar errors are done in the management of other patients as well.

I have done this by discussing it with patients (in real life and in cyberspace) and also with various neurologists, including some who were involvled in my care and were ready to have those discussions with me, once they realized that I am truly trying to understand and learn, and not fiind reasons to sue them or destroy their reputation.

one of them who sent me home in a near crisis state, telling everyone involved that I was just "anxious" sort of apologized for not knowing about various respiratory tests. talking with other neurologists, I realized that most of them don't have much knowledge in this respect and yet, are those that make the decission if the patient has MG related respiratory problems or not.

I also realized (from talking to neurologist and patients) that more times then not symptoms of respiratory muscle involvement are atributed to emotional problems. I can only speculate as to the reasons for that. but, what ever they are, I think that this has to change. I think that neurologists just don't have the right tools and are very frustrated when faced with symptoms that they don't know what to do with. and without proper tools it is very hard to evaluate respiratory muscle involvement in neuromuscular diseases.

although, I have been "working" on this for quite a while, with a great person who has dedicated his life to help MG patients, the ordeal of one of the members on this site. a very courageous woman, who has been struggling to recieve proper managment for her illness with no avail, made me want to do something now.

and I just wanted to know if this is the right way to go, and if people have any better ideas or suggestions of how to make this info. more accurate, easy to understand and available to those that need it- patients and their neurologists.

as a patient I would have loved to have something like that, a few years ago, when I really knew very little, and trusted my neuro, when he told me that there is no way that the gradually worsening respiratory symtpoms I was experiencing could be due to MG.

as a physician, I am always glad to have better tools that will enable me to better manage my patient's illness. and I believe that neurologists facing MG patients would be glad to have better ways to understand their illness as well.

thanks,

alice

Alice,

Please do not leave this forum, 99% of us here respect you and what you have to say. First and foremost YOU are an MG patient, seems someone here has forgotten that. Petty jealousy from one does NOT reflect what the rest of us feel.

Please stay and continue to look to us for support and input.

Alice, Both patients and doctors need as much information as they can. Medical school is great but, as I'm sure you know, you can't possibly learn everything you can to help patients. That's why there are specialists. But, even then, there are neurologists and pulmonologists who don't know enough about MG. Because of that, patients who are suspected of MG often go from doctor to doctor to get help and it can take a LONG TIME to get diagnosed. And some areas of the country do not have MG specialists.

I fully support you in this effort, as I have already said. Keep fighting the good fight.

Annie

Alice,

You are a valued member of this community. It isn't just the knowledge you have shared or your inteligence that we have admired. It is that you are a caring person. I - like others - do hope that you will reconsider. It would be a loss to all of us if you were to leave the forum. But whatever you decide, I wish you the very best in all of your endeavors.

Sue

Alice, PLEASE DO NOT LEAVE!!

A journal article that might be helpful -- I have a copy in my purse -- along with all of my other info and literature -- in case I need to "teach" any docs (LOL).

http://www.rcjournal.com/contents/09.06/09.06.1016.pdf

Please stay Alice !! You have helped us so much and your knowledge of the MG and respiratory markers is invaluable. I know from my personal experience that most Neurologists have no idea of pulmonary tests and how to interpret the results. I have had the results you talk of - and 3 Neuros , 2 Endos and a Pulmonary have all missed the significence of what it all means. If there was a DVD or published paper that made this all clear - the quality of life for the MG patient ( whether dx or not yet dx ) would be vastly improved.

Please stay !!

Alice,

Please don't let ONE member be the cause of you leaving. You are so caring and helpful to us all. Please stay!

Hugs,
Pat

Why does abg's in a myasthenic show hyperventilation first?