[bluesky]

Hello Annie and Everyone Else!

Annie, you recently mentioned in the thread regarding mestinon effects in normal people that the average length of time until diagnosis for men was 1 year and for women was 7 years. I know you've said this before too and I'm hoping you can help me on this. Do you have a reference for that that you could point me towards? I'm not having any success finding it and I need the information for my disability application.

Thank you!!

[AnnieB3]

Hey. I think you mean me, not Annie59, right?

Back in 2004, I attended the MGFA annual meeting. Dr. James Howard was one of the speakers. It was he who stated that fact. So I was not quoting a written source but a verbal one. I have not been able to find a source that states that specific information but have run across that basic info through the years. I don't have a PubMed source for you though.

I could not find a reference to that meeting on the MGFA site. Maybe if you call them, you can get a video or transcript of that day.

You don't have to look very far to know that sexism is alive and well, in medicine and everywhere else. For me, this topic often boils down to "controlling personalities" and their insecure natures. I never knew that "control freaks," a label I don't like, are essentially insecure. They are attracted to positions of power, like doctoring. They tend to put down anything that moves in order for them to feel good. The minimizing of women's, and sometimes men's, symptoms while doctoring is only one way they do it. CP's need to "level" others in order to feel good about themselves (the other person falls in stature while they rise up).

The neurologist I first saw for MG falls into that category . . . allegedly.

I'm really sorry that you are not getting serious consideration for your disability application but that is yet another example of sexism. Women are often made to wait until the appearance before a judge in order to gain social security disability. Nope, don't have a reference for that either - only the statements by those I spoke to during my own process. The soc. sec. administration does not "like" anyone getting that money, really. Men too.

I really hope you can get the information you need, Ally. This really stinks.

Annie



http://www.independent.co.uk/life-st...ns-733847.html

http://www.jstor.org/pss/3423886

http://www.sciencedaily.com/releases...1106083038.htm

http://politics.usnews.com/opinion/b...-and-well.html

http://www.nytimes.com/1991/06/04/us...tor-quits.html

[bluesky]

Thank you so much! You are an incredible fountain of knowledge, as usual.

I haven't been given a hard time by SSDI yet, but I fully expect to be. I stupidly did not apply for disability for too many years because I just kept thinking that if I could only push myself hard enough I could get the upper hand. Of course I was filled with self blaming and guilt for so long, and I had no idea what was wrong with me, and then it became to late (I thought) to apply for disability. Ugh. Plus, I didn't think I could get it without a diagnosis and no doctor supporting me. So, I'm in the position now where I have to prove that I hade this disease, or actually diseases as it turns out since I have at least three, since 2004. Luckily, I have this brilliant woman helping me. She runs her own company as a disability consultant and she's passionate and sharp. I didn't even know that I could still qualify for disability until very recently so it's a huge relief and I'm determined to win, eventually. I was so terrified for so long that I would end up starving under a bridge somewhere.

I absolutely agree with you in your description of what happens to us as patients. You are absolutely spot on. And I can say that after 9 years of horrible medical care. I finally found a neuro who cares and is wanting to figure this out for me, but it did take almost nine years. But I am so grateful to her (of course it's a her!) since I have test results and specific symptoms which point to five different neurological diseases. And she's not running away, worried about all the time I'm going to take! A neuro goddess.

Anyway Annie, you rock. Thank you so much for your help.

Ally

[AnnieB3]

If I rock too much, I might sink myself. I looked but there's no icon for a "rock band," which is what we all are here. Teamwork is something doctors should look into.

I'm glad you qualify for Soc. Sec. Disability. It's definitely not how I'd like my life to be but if it weren't there, I'd be in a homeless shelter . . . without health insurance.

I hope you can get down to real answers too. I seriously can't even handle what some of you go through. It makes me want to scream.


Annie

[DesertFlower]

Annie B3 and Ally,

Thanks for these entries about disability....I have been avoiding appying for Soc Sec disability since I got MG, going on a year and a half now....my neuro told me I couldn't get disability, to just wait and I would be able to work normally...still not happening although I can and am working part time.

Annie, your comment about living in the homeless shelter got to me...I'm afraid that is where I am headed to...I still have about 1 or 2 more years worth of savings account money that I am living on now to supplement my part time work, but it is slowly getting drained away. Your comment was an eye opener. I have to do something before my savings is gone.

Last week I went to apply for state insurance again...last time they denied it because they used my previous income...and I came home in tears, so disgusted with myself for not being able to work and take care of my kids. I am proud to take care of myself and want to work. I would work more if I could, I am really getting depressed about this...I am going downhill emotionally.

The good news is that my MG seems to have stabilized and I can live with it other than the work part, working more than part time makes me crash and I am unable to work for a few weeks afterward. In fact, last week I gave it one last try to work more since I have been feeling mostly good, and I have been barely able to function since attempting more work, but am recovering. Just can't do it.

I just have to apply for disability, I really don't think I will ever be able to work full time again even if my neuro thinks so. I wish I had someone to help me through this, every time I get out the form for disabily I get depressed and can't even look at the form...maybe I should find someone who does this for a living, let them represent me...I don't know.

Sorry for not starting a new thread, don't have the energy.

I wish everyone the best.