I cant afford this anymore, i owe so much money for my surgery and appointments, and my husband took off so much work while i had my recent stay, so i think having the extra disability money would be nice to help pay bills , and since i have seem to have to so many problems latley i dont think i hold a job well has anyone else applied for this stuff, because of the moyamoya and the after effect? have any luck ???

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

Hi Michelle,
You should apply for disability right away.  You do not need an attorney to help you unless you get denied.  They just take 1/3 of your award.  The paperwork is easy to fill out and make sure you include all your dr. appts., tests, surgies, as well as having tia's, numbness, weakness, fatigue and really stress your headaches/migraines.  All this will help you.  I applied and was approved right away but they did tell me that MMD is still a shakey area and not on the automatic approval list.  He did say that Migraines were and he would also stress heavily upon those.  Also make sure you list all your meds and all your drs.  Once your on disability for two years you qualify for medicaid (at least that's what they told me).  I've  heard you have to be careful with Medicaid because there is a lot of necessary things regarding MMD that they do not cover.  I've hear they will not cover the bypass surgery should you need your other side done, not certain though.  Good luck.  Hope to hear how things go.
Best wishes, Lorie
PS:  Glad to hear your feeling better! :)

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

thanks everyone for the replies, i go to the surgeon thursday so i am going to make sure he even will fill out the papers for it ,and then send in all the papers i filled out, and update everyone after thanks

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 signed my daughter up for disability and they told me that it takes 30-60 days before we hear something. It is being reviewed at this time in front of the medical team. Amy has a long road to recovery after her surgeries in Nov. and she hasn't had an income since sept. Hopefully this will help. :)

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 applied for disability for my daughter Amy and it took 30 days and she was approved for SSI and Disability for having MMD. They took it in front of a special medical team since it is not one of thier known diseases and approved quickly. SSI will start for march and disability takes about 5 months to receive a check. It will be nice since Amy hasn't worked since sept 2008. It just told them not to focus so much on the disease but the affects of the disease that is so disabling.
                                      Christie

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.

Well my daughter has gotten 2 SSI checks so far, started 2 weeks ago. I was very surprised to see them coming so soon. Amy and i interviewed on the phone with SS in the middle of dec. and the first check was for feb. Thats way quicker than i thought. They had told me it would take 5 months. They do not know what MMD is but they brought a special Dr. in to review my daughters case. Amy and her kids are living with me and she is still taking physical and occupational therapy. It is possible to get, they just need to educate them selves.
                    Christie

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!

My daughter lives in Missouri too! Here in MO are you from? :)

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

well she is from columbia MO but staying with me in IL since her surgeries last Nov. She had several strokes during the surgeries and can't live on her own yet. She is currently in out-pt rehabs but they dont seem to be helping much and we are thinking she may need to be admitted  for in-pt rehab again.  Amy received 2 disability checks from MO but they transfered her to IL now so next month it will come from IL i guess. I was very surprised at how fast she got approved in MO after hearing from several people on this forum. We never met with anyone in person. It was all done online and spoke with a lady on the phone for the interview twice. Sorry for your difficulty. Hope it goes well now for you. Christie

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.

I signed my daughter up while still in CA after her surgeries and at that time they told me she had to have not worked in 5 consecutive months. Since she went on medical leave in Sept., she received her first paycheck in march. They told me she had to be disabled. We tried using the moyamoya diagnosis but that didn't really work so we focused on the strokes she had during her surgery in CA. Hope that helps.  Christie

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

http://www.socialsecurity-disability.org/content/stroke-and-social-security-disability    that is the site u can apply and the link is for the page on qualifing strokes

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.

I applied for disability in august of 2010 and was approved this July 2011. I was denied twice and did get alawyer involved but it was a pretty quick process overall. I am now in the process of getting approved for Medicaid since Medicare does not kick in for 2 years. I did find help with medical bills thru the hospitals charity care program in fact that was how I was able to get my first bypass done. There are programs out there to help with medical expenses you realty should check if your hospital has a charity program then your costs are based on the income you have. Hope this helps.
Kim

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

My wife was recently diagnosed with this, through a follow up to a closing cartoid(sp?) artery thought to be related to Tachyasus (sp? again, sorry) While we applied for her disability back in march of last year, it was denied.  We now have a lawyer, but the really sad part is that since she is tried to work for  several years, it is going to be pitiful what she will get from SSI since they only go back 5 years on income, and it took a long time to get a diagnosis (since we didn't have insurance part of this time).  Through the years the doctors we could afford to go see would treat the symptoms or just say it is your diet...while we are not the picture of healthy eating we do not eat out much and cook semi light with a lot of chicken and turkey. 

Well, sorry to ramble, I will get back to reading to see what I can learn from this wonderful site before my 12 hour shift tonight.

Mike

PS.  We are in Jefferson City Missouri

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.