This disease is expensive
 

I don't mean to post so many times but I have so many questions. What have you all done to offset some of the costs? fundraisers?

Do you have any type of insurance? If not, starting in January 2014 there will be opportunities to pick up insurance even if you have preexisting conditions. My MG costs about $400,000 yearly with all of the treatments and meds I take - if I did not have insurance I would not be alive as I could not afford to do this alone.

I have been really fortunate so far. I work for a University and they have very good health insurance and disability benefits. I am currently still working full-time, but I am not sure how much longer I will be able to do that. If this IVIG does not make me feel better, I think I will be out on disability again with the next heat wave.

There is some treatment assistance through MDA. Most state have a prescription plan you might qualify for. If you are disabled from working you may qualify for SSI disability and medicare or medicaid. Some states also have their own disability benefits. If you do qualify as permanently disability, there are discounts for real estate taxes and utilities for which you may qualify. Depending on your age, there are agencies like the "Agency on Aging", housing for the disabled, etc that may be able to give you assistance. There are private organization like Catholic social services that can help you drive through the maze of assistance programs.

Good Luck
kathie

Hello WVfox
 

I have a few suggestions that may lead to some fund raising. If you are involved in your community, sometimes you can generate interest in an auction or sale of some kind. I was an artist, and an auction was run selling art work so I could have my origional spinal fusion. I had no insurance due to pre-existing conditions. I also had help with our local fire department, who had a garage sale.
Most communities have a womans center. They may have some other ideas. Your local hospital may have a patient advocasy person who can direct you to physicians willing to treat without insurance or money for that matter. I went as far a calling and going to see my congressman. I was desperate.

If you work, there are agencies that pay for your treatment as long as you can work.

None of this is easy to find out about, but if you are persistant, help can be found. There is also a web site, that raises funds for people with medical problems. I will have to find out the name of the site. You advertise, and people lend a hand.

I do know the cost of medical treatment. Most average joes, that don't have insurance are in a terrible bind. This is horrible to do to folks in a country as good as ours. I hope future care, has more help than what is currently available. So far I don't see it happening.

I would start with the patient advocasy person in the biggest hosptial in your area, perhaps a teaching hospital.

I did have that agency pay for one of my surgeries, and I did go back to work for a time. My local hospital, had the advocasy program for those who cannot afford medical care.

I will keep you in my thoughts and prayers. I am sorry you find yourself in this situation. I know all too well how difficult it is for you. I care. ginnie

Think of it from this view, WVFox: Every time you post a question, you are helping hundreds of people. :) And all the people who are so helpful and come in to share their experiences are doing the same. :)

My grandmother always said there is no stupid question if you don't know the answer, she was a pretty smart lady! Thank you all for being so welcoming, there isn't a support group for MG anywhere near where i live but if I get back on my feet.... I'm going to make sure there is.