So sorry as you said let them live our lives. I have applied and heard nothing yet.

Do you have any recourse at this point? Can you appeal? Do you know who made the final determination, and on what basis the decision was made? They cannot POSSIBLY be basing their decision on an accurate picture of what life has become for you.

Do you have a copy of your policy with the insurer's conditions of coverage so you can determine whether or not someone with your physical symptoms SHOULD be covered, or if the condition is exempt? There must be (what they considerto be) a valid reason the determination was made, and you should therefore be able to contest the decision. Has your doc been involved and written a statement or recommendation for you?

Yes, they said I can appeal which I will. I don't have the letter in front of me with their reasons but I will post them at a later time. I have an earlier letter from them saying I was covered until January 6, 2013 but they have stopped all payment effective November 21, 2012. They said "I" have to write them a letter telling them why I feel I can not work. It is going to be a long letter!

I don't know if this will end up helping people like us, but I saw this on the NORD Facebook site today. Social Security is going to expand their list of accepted conditions. Here's hoping :)

National Organization for Rare Disorders, Inc. (NORD) 8,197 like this
about an hour ago
FYI: Michael J. Astrue, Commissioner of Social Security, will announce the expansion of the list of conditions that qualify under the Compassionate Allowances Program at a Capitol Hill event on Thursday, Dec. 6.

Members of the media, patient advocates and other interested parties are invited to the event, which will take place from 10 to 11:30 a.m. in Room 902 of the Hart Senate Office Building, Constitution Ave. and 2nd Street NE, Washington DC.

I am sending you a great big ole bear hug!! I am so sorry you were turned down when you certainly don't need to be. Alot of your symptoms you describe I had and were made better with a shunt. At least in the short time I have had one but I still don't know if I can work. It would be nice if we qualified for disability bc this illness is debilitating. As I understand it, it's not unusual to apply and be turned down as much as 3 times before you are finally accepted and I know it's a headache with the mountains of paperwork and MD visits. I say appeal and hopefully the second time is the charm!:)

I am on SSD, and have been since 2003. I got a lawyer after my second denial. The lawyer won't take you on, if he doesn't think you will win, because he doesn't get paid unless you win. They only take a percentage of your backpay, so it is well worth it to get a lawyer. Get one who specializes in SSD cases. It is a lot of paperwork and getting ALL of your medical records. And it helps if you have a doctor on your side. It doesn't have to be a neurologist or neurosurgeon, it can be your GP.

For your company's long term disability insurance: BEFORE you appeal get a lawyer. This is critical. If you wait until after you appeal it will be too late. Typically lawyers take a percentage of what they recover for you only if they win.

SSA: Apply. It doesn't matter what your company's insurance said. The two are not related. If you are turned down once or twice by the SSA then get a lawyer. Same deal. They take a % of the back payments they recover for you.

It's hard to get the benefits that you are due from the insurance company without help. Call an SSA law firm to get a referral to an insurance co. attorney. Sometimes the SSA atty and the Ins. atty like to work together so the cases they both put together make it easier to get both approved. (SSA & Ins. have different rules about who gets approved, and sometimes what's in one's case can hurt you in the other case.)

Last bit of advice. Don't use the SSA attorney your company's insurance company recommends to you. They often give your employer private information about you, like if you have been approved for social security. They are also generally not very good at what they do. Get your own attorney. Things will be much better.

P.S. My employer's insurance company told me I HAD to use their attorney for dealing with the SSA. I consulted with a lawyer and it turns out that wasn't true. I told the insurance co. that and they said that they wouldn't deduct my attorney's fees from my settlement like they would if I used their atty, so I'd owe them more money. That also turned out to not be true. I hired my own atty and immediately saw the difference in how my case was being handled. SSA approved.

Thank you for your help. the case manager told me I had to write a letter telling them why I thought I couldn't work. I was thinking that it sounded strange. they said since I can drive and take care of myself that I can work. Also at my last MRI in July of this yr, the NS wrote that the shunt was placed properly and wasn't responsible for my headache and dizziness at that time. I remember telling the case manager that right now I only trust myself to drive SOME days to the local store about 4 miles away to get the newspaper. For my job I use to drive 3000 miles a month covering my territory. Yes I can take a shower by myself but sometimes I forget how to shut the shower off when I get out and I'm flushing the toilet a few times or flipping the light switch trying to get the shower to shut off.
As far as my memory, I can remember my own daughters phone number who I speak to a few times a week, how the heck could I go back to my management position where 20 people reported to me weekly.......???
My shunt surgery was 7/2011 and I sent back to work 9/2011. I tried and finally gave up 7/2012. The stress of trying to do a good job at work while taking care of myself was so overwhelming. My neuro psych test documented impairment but they sort of skipped over that.
Thanks again for letting me go on and on and on and thanks again for the advice. I will be making some phone calls to lawyer offices tomorrow morning.

It will also help if you print off two copies of information about PTC, one for the lawyer and one for the judge. PTC is a rare disease, so chances are your lawyer and the judge have not heard of it. So by giving them printed information about PTC-- symptoms, medications and their side effects, shunt surgery options and their complications and constant need for revisions, ect.--this gives them all of the information as to why you aren't able to work. That is what I did, and the judge actually argued with the voc rehab guy! The judge said "are you stupid! There is no way that she can do any kind of job when she can't be upright for more than an hour and she won't be able to keep any job when she is constantly having to have surgery to replace her shunt!" I just about fell off my chair when the judge called him stupid! Anyway, the more information you can provide, the better your chances will be!

Not being able to drive is NOT a reason that will be accepted as a long term disability. That is because you might still be able to do other work even if you can't drive.

Really. Get a lawyer. It's all too complicated for me.

Insurance companies are their own kind of hurdle.

Here's a link to the SSA site with the classifications of types of Social Security disability and the requirements.
http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

My doctor wants me to have another neuro psych test and use the last one I had in May as a baseline to compare for the disability company. Just found out that Aetna only pays for 1 per year................It just seems like every time I turn around something else slaps me down. Bad headache day today too.