Myasthenia Gravis Association of Greater Kansas City

The Myasthenia Gravis Association of Greater Kansas City serves those living with MG and their families in Kansas and Missouri. The MGA is dedicated to improving the quality of life for those who are affected by this autoimmune, neuromuscular disease through awareness, education and patient services.

Category:

Nonprofits & Activism

Tags:

• Myasthenia
• Gravis
• MG
• Nonprofit
• Kansas
• City

[ecobra169]

I urge everyone with mg to take a look at this woman blog and then you will have an understanding of what you are up agains Google her name and see for yourself. Freya ross .

[mgakc]

@TheMarkNessMonster I hope that doctor comes back or one who is knowledgeable about MG becomes available. If you can't transfer him to another hospital, can the doctors there can consult with a specialist elsewhere? How many plasmapheresis or IVIG treatments were they doing? Most people I've seen get at least 5 treatments, one every other day. In addition to the resources I gave above, you might also go to our website - mgakc (dot) org - or our Facebook page - search for mgakc.

[TheMarkNessMonster]

@TheMarkNessMonster Trouble is, he's been passed around like a shop rag from doctor to doctor in that hospital and none of them communicate with one another. He's seen over 12 doctors in 3 months, with...you guessed it, 12 different medical staffs, none of which communicate with one another. It's all just a 'job' to them, but to me, it's my dad's life, and we are getting nowhere, while he's dying in a bed. When we went in in July, he weighed 190 lbs. Now he weighs rougly 120.

[TheMarkNessMonster]

@TheMarkNessMonster Our biggest problem isn't finding doctors who know about MG, they all do, we are in need of competent medical staff who knows how to do their jobs and are able to think past a chart. These people don't realize that when you mess up with an MG patient, you won't know it for a week. If they see him suffering for symptoms, they treat for whatever is happening at that time, not for what they did wrong a week ago. I've told them that over and over, and it falls on deaf ears.

[TheMarkNessMonster]

@mgakc Yes and they seemed to work, but he's relapsed so many times and the doctor tending to him that knew what he was doing has disappeared, and nobody knows where he went. Right now, he has almost no colon, because of 1 polyp, a colostomy bag, they are about to do a tracheal bypass because of the amount of intibations we've already been through, and he's almost crashed just about every time he starts physical therapy. He has no more leg muscles left because he's 2 months behind on PT.

[mgakc]

@TheMarkNessMonster - So sorry your father is going through all of this! Have they tried giving him plasmapheresis or IVIG? Those are the two most commonly used treatments for a MG crisis and are usually very effective. Search for the Myasthenia Gravis Foundation of America and look under

Patient Education for more info on these and other treatments; maybe the doctors could also look at this website The MGFA also has a manual for medical professionals that can be ordered or downloaded free.

[TheMarkNessMonster]

My father is currently in the hospital being treated for what started out as an MG breathing crisis 3 months ago. He's been in the hospital since, making frequent trips to ICU, coded twice, and has been intebated 3 times. He's in ICU right now(10-18-10)for a week, and isn't a victim of his MG, but is a victim of crappy doctors. We are trapped at Lourdes Hospital and we cannot afford to send him to somewhere competent like Ochsner in NOLA. The doctors tending to him now are killing him. Help.

[tropicanasiempre]

Thank you so much, of course I want to search, and yes it is a lot help, thank you again.

[mgakc]

Actually, there are several MG associations in Canada. Search online for Canada MG Associations, or, search for the Myasthenia Gravis Foundation of America - under their Patient Education button, you can view a list of international organizations, including several in Canada. Hope this helps!

[tropicanasiempre]

Hi there, good job!!, I would like to be in one of this association but sadlely here in canada I don't here nothing about it, and I have MG since 2000.