hello again,
We seem to be on the same page at the moment. let me try to help. my sister lost everything she had before she was approved, but she did get it(don't wait). I just applied for my 14 year old daughter molly last month. they said it would take 6 mos. they called me on friday to say she was approved and would be calling to verify income info. you should apply you more than qualify you can do most of the app on line. get to it today! I wish i had done it 2years ago. good luck,just do it!
best of luck, Amiee

I APPLIED LAST YEAR ANS WAS DENIED.  I HAVE APPEALED IT TWICE AND ITS GOING TO THE APPEAL BOARD AND I AM WAITING A DECISION SO GOOD LUCK I HAVEN'T HAD ANY

AMY

okay the doc is sending phyical medical rehab doctor, to see what they think about gettng me on disability he has to see what they say before he can say anything,

I hope you all get the NORD newsletter!  They are trying to get a few of the rare diseases put on a list so ppl w/ them don't have to wait to get approved for disability because the ppl on the other end don't know anything about the disease.  At this time, I have heard several ppl here mention sending letters to Oprah, etc, to get the word out.  I would like to say that I believe we should all be sending letters to social security (disability) to lobby them!  Even for those that have been able to return to work, how long does it take after surgery to recover?  By the time we could get approved for disability, we all probably could have recovered from surgery.  I believe anyone dx with MM should be automatically approved for short term disability, with medical benefits.  Surgery seems to be the only method for successful treatment and it takes time to recover from that!  Also, there are medication expenses, etc after surgery, even IF your regular insurance WOULD pick you back up.  Why should some of us have to wait for that next stroke that DOES completely disable us before we are approved for benefits????  Or until that next anuerysm breaks, etc.  With the new administration coming in, I urge all of you to start sending letters to Social Security as well as Tom Daschle, head of HHS and start lobbying for our cause!  Don't underestimate the power of lobbying, even if we aren't an organized lobbyist organization...the pork barrel will roll, (it always does) lets get it rolling in our direction!
God Bless You All,
Michele

i still have not heard about mine.  it is up for the second appeal and i am waiting for a hearing.  i am not working right now and hope this time they give it to me.  i live in texas and they dont seem too know what this disease is.  i am 42 years old and that is what is keeping tem from giving it to me.  its not fair.

I think it really depends on what state you are in.  I know some states, I live in Missouri,  are more backed up on cases than others.  I applied and was denied then it took four years and hiring a lawyer to finally get approved!!  I had to go before an appeal board and I had to see one of their doctors and in my case they really, really, really took into consideration my migraines.   Good Luck!

I am near south Kansas City, where does your daughter live?

guys, I had my first bypass on right side last Aug. and return to full time job since Oct.  But I'm a consultant, so sometimes I work full time, othertimes I might be out off job for couple of weeks.

I start experiencing some tingling and numbness and furtige on the other side of body lately. I'm in the process of getting a new MRI.

My question is: if I'm still able to hold a full time job (even though sometimes I'm really struggled but I have to work due to financial pressure), can I apply for disability?

any comment will be highly appreciated.

thanks Christie, I really hope not need to go down to that path. I'd love to work as long as my condition allowed.

I filed for it when I was 18 and It took me a few months to get it. I had a stroke that they claim was caused by MoyaMoya when I was 11. It has effected me in so many ways. I cant hold jobs for long times. The down fall is that if you do recieve it your husband who works can affect your disability. The way that the system works is just wrong. It is not much money that you will recieve but the medicaid is awesome to have. Since you are going through so much it is a good thing to have and it will help extremely. From the day that you put your application in is when they start the process. So if it takes like 6 monhs then you will get back pay and all from when you filed. I hope that everything works out well and goes easy for you. But you may be denied a few times before you qualify just dont give up.

My daughter got approved no questions asked just proof of income.  I was so very suprised as I thought it was going to be a battle so I wanted to get through that so that when she turns 18 she has something to rely on as she is missing so much school as it it.
Jen's Mom

Don't give up. when you answer the billion questions, be sure to stress you can't care for yourself hygiene wise. I get help from my family for getting dressed, etc. This is a key necessety for getting approved. I got approved first try but i have severe spinal fusion already.