I'm so sorry you're having to apply for SSDI.

Many mistakes are made in these vast systems. The person who told you your claim had been approved may have been looking at a computer screen that said you had been approved, and later on it changed and said it was pending. Someone somewhere decided that more information was needed, maybe.

I'm just guessing but it's based on the problems I've seen people having dealing with computers and with lots of information coming at them. I don't think anyone intentionally lied in this case. Social Security is an overloaded system, and it's amazing to me that they do as well as they do.

I hope they told you WHAT information they still need. You might be able to expedite the process if you know that.

If you have a neuro who can write a supportive letter, that might help, but that's probably already been done. Any other doctors who might chime in with more supportive letters--ophthalmologist, ENT doctor, primary care doctor, etc.?

Have you received word yet on your application status? I am hoping that you finally got the approval for SSDI.

No approval yet. It has been a huge mess all along. The last time I called the SS help line, the person I spoke to said my application was just sitting there and couldn't get processed. She said, quite apologetically, that she thinks I will have to start my application over again.

So, feeling defeated by the whole process, I called a disability attorney. They were able to confirm what she said. They logged into the system while on the phone with me and could not see my application pending either.

Luckily, I had the printed form after submitting it with the application number. So they said they would take my case but I would have to pay them up to 25% of my settlement if I get approved. They sent me the paperwork and I sent them the printed copy. They said they would try to get that one to go through, effective December 2016, but if they can't they will have to start over with a new application.

If they can get the original to go through it will mean more money for them and the back pay for me so I'm crossing my fingers that they might be able to fix it. I'm not going to hold my breath though with all that has happened along the way so far. :eek:

I truly wish I could afford to just wait until I was 67 to get my full SS amount but I really need the medicare coverage. I'm paying for cobra through my former employer and even that is expensive. After that runs out I'll go on my husband's pension insurance plan and that is close to $800 per month just to add me on.

I'm just so tempted to just drop the insurance and wait it out but then I would have some sort of health catastrophe for sure and we would end up homeless.

The thing is also, I don't appear to be that sick like so many with MS. But I only have maybe two good hours a day. And I always try to put up a good front. In the neighborhood we tell people that I'm retired. I don't like to explain the MS, it's too stressful to me when people look at me like I'm just being lazy. I've never been a lazy person in my life, I've worked since I was 12 years old except for the years of being a hard working stay at home mom with our boys.

The good thing is I've really focused on budgeting. I've cut expenses drastically. My brain is still fairly good at handling money though I've made some mistakes even with that.

I feel like I should write an essay about all of this when it's over. "How not to apply for disability in 12 easy steps". :D

Another update today. I spoke to the attorney on 8/21 after being told that I would have to reapply for benefits. I logged in to the SS website today and there was a change to the application as of 8/31. :eek: It is "Disability Determination Pending".

I wonder if by verbally getting the law firm started, they called and got the ball rolling even before I had sent them the paperwork?

And I'm not usually easily confused or confuddled but this whole mess has had me doubt my sanity.

At least if it is pending, and they initially deny it, the attorney can help with the appeal.

Now I can see how some people die before getting benefits.

I got a call from someone at the state asking me some questions. She wanted to confirm where my primary doctor was. She said they hadn't received the info from my last visit.

The clinic has recently been taken over by Northwestern (a large Chicago medical group) and so the old records are not readily available. She said if they didn't get the info they need, they will send me to another doctor, but they want to avoid that if possible because they would have to pay for it.

I have a December appt with the neuro, and she said she was hoping to get this finished before then if possible. I wonder if the attorney is responsible for them wanting to get this completed?

I went on a couple of trips recently, one to California with DH to see his rich cousin, and just got back from Mexico where my dear sweet niece got married. I was reminded of my limitations in both places. I think I need a t- shirt that says "I'm not lazy, I have MS." Someone in Mexico asked if I was anti-social because I wanted to sit in the shade away from the group. At least when I go with DH alone on a trip I can rest a lot.

Others just don't get it, do they? They can have MS described to them up and down and sideways and they still don't get what it's like to give out after a short time and find yourself coping with poor vision, loss of bladder control, shaky hands you can no longer feel, and inability to walk, just to name a few of the problems that come on with fatigue.

And it isn't what most people mean when they talk about fatigue.

It's a shame when people in charge of making decisions about benefits lack any understanding of MS but unfortunately it sounds as if there are quite a few of them around, still.

The lawyer you have on a contingency basis is good, IMO. I had a lawyer on those terms years ago when I had to appeal my SSDI termination. It was pointed out to me that a lawyer wouldn't take a case on a contingency basis unless there was a good chance of winning in that lawyer's opinion. After all, if you lose, the lawyer gets nothing.

It took 5 years but I did win the case. Your case shouldn't take that long. This was back in a time when there was quite a commotion about disability cutoffs, which had been happening at an alarming rate because the government was in a mood to "trim the rolls."

It can be a long uphill battle but all indications are that the situation is better now.

They "lost" my file, found it, think they put a big B**** on it, got through on 2nd try. I wrote a description of my day, was too positive so using their own language(You can find their Blue book online using their description of MS. Had a kind person, sure a recent hopeful graduate who soon quit the place. Within months got my SS and both kids as dependents got checks each month until 18. Used to pay college. Not once have they're contacted me since (over 10 years). Hang in there and fight!!! I made and kept copies of everything.

My kids received monthly payments too until age 18, and that was very helpful.

The paper-pushers at Social Security can be a pain but a few of them know what they're doing, and being persistent helps.

An update:

They sent me to the local social security doctor for an exam. A few days later they called me with questions about my antidepressant meds. I told them that depression is common with MS. They said that they might need to send me to a psychiatrist anyway because of the rules.

I told them that my neuro has scheduled an MRI for January and they said call us and let us know the results of that.

Then the next day they called and asked about my work that I did in my last and my previous job (10 years ago). I described my work and reminded them that in the previous job I had to sit while working and that I had great difficulties. The woman just wanted me to answer, didn't want explanations. I suppose it has to be that way or they can get mired in complications. She said she would send the report to the local social security office.

Meanwhile, I had an appointment with my neurologist and I brought a form that my attorney had sent me that was a questionnaire about my MS and the functions, etc... The doctor filled that out and I sent it back. I think they'll use that in case there is a denial.

The people on the phone have been polite lately but I have no idea if I am near getting approval. I suppose I'll find out within a couple of weeks.

If this is approved I'm hoping that medicare coverage won't be long after.

I'm glad to know that your case is moving forward, or at least it sounds as if it is.

Unfortunately, there's a 24-month wait until Medicare starts, or at least there always has been even though many have protested this policy. I haven't heard that it has changed. And I'm not sure if that's 24 months after disability benefits begin to be paid or 24 months after it's determined that your disability began.

Good luck with the psychiatrist. I too was sent to a psychiatrist--and to a clinical psychologist. The psychiatrist interview took only about an hour and wasn't difficult but the clinical psychologist put me through an entire day of tests.

I wasn't told what tests I was being given but later when I requested copies of my medical records I learned that I'd been given an IQ test.