Good news and bad

[Aaron98]

I just received my second denial letter from SSDI for disability benefits. The disability attorney that I am working with tells me that this is sadly very typical, and that I will likely not be approved until I meet with an administrative law judge, which could be up to two years from now. Most people I've spoken with who have AMN received benefits on their initial application. Has anyone else had their approval take this long?

On a positive note, I had the annual MRI of my brain and spine two weeks ago, and according to the local radiologists, there has been no significant lesion development in the past year. I've had the images sent to Kennedy Krieger, as well, and expect to hear the same from them. Good news!

I met with my neurologist this morning, and he wrote me a prescription for methylphenidate, for fatigue. Modafinil and amantadine did nothing for me, but maybe this will. I plan to begin trialing it tomorrow - I'll let you know how it goes!

[monkeybus]

This is not good.

But, given that the symptoms of our disease are whatever you say they are, did you tell a good enough story?

I'm lucky that I don't need benefits, but if I did, I'd do an acting job that would put Marlon Brando to shame.

What's with the Methylphenidate? Does it work? I tried and failed to get that prescribed.

[Aaron98 in reply to monkeybus]

I know this isn't what you meant, monkeybus, but I don't need to make up a story, or embellish at all. The truth is bad enough.

I spent countless hours over many days filling out the forms that asked about lifestyle changes and how my diseases affect me. My mother, brother, and wife all wrote family support letters for my file, stating how AMN has changed me. My primary care physician, who strongly supports my desire to seek disability benefits, filled out a residual functional capacity report that stated in many ways that there is simply no way I could work a five day, 40 hours a week job. None of this made any difference with the adjudicators who make the benefits determination. Apparently the family support letters sent by my attorney's office never even made it into my file. And once we were notified of that, there was no time to resubmit them before their determination. The system is broken, in so many ways.

The methylphenidate was suggested by my neurologist, who has had patients take it who have MS and other neurological diseases that cause fatigue. I've taken four pills so far, two yesterday and two today. Thus far, I'm not impressed. It doesn't give a boost of energy or alertness, and doesn't seem to relieve brain fog. I was yawning all afternoon today, even just an hour after taking a pill. 5 mg is a pretty low dosage, so I'll give it a few more days and then ask about ramping it up. I thought I read that you got your hands on some once, monkeybus. What dosage did you try, and what did you think?

[monkeybus in reply to Aaron98]

I thought twice before hitting send. But, you get my drift. It's the job of governments/insurance companies to deny, not to pay.

In my own beloved England, I constantly read about chronically I'll people being declared fit for work. A terrible indictment of our present times. Folks in need treated like freeloaders. We need Charles Dickens to properly document this.

My time in business taught one thing: ask for more because they'll always give less.

I took Methylphenidate about 10 years ago. Before my disease properly manifested. Someone at work gave me a pill (just say no, kids). Very nice, I enjoyed it a lot. Nothing special at whatever the lowest possible dose is.

Extremely low octane stimulant. My friend is prescribed for ADHD. He takes a lot. I'd certainly try it again, but it is a very real stimulant at the end of the day. Mind how you go.

My fatigue is at at world record size proportions. I'm lucky that the Modafinil keeps it at bay, but when I'm alone is when it hits me, no matter how much Modalert. Shattered, truely shattered. I went through a phase of taking Armodafinil. But I was too wired.

[mvruggink]

Hey Aaron98,

I applied for SSI last year in November I believe. I have an internal examination tomorrow at 2:40 pm which I believe is my last final thing to be approved for this. I am going to be 30 this year and my progression has been moving pretty fast in the past 8 months. If I can help at all let me know!

[Aaron98 in reply to mvruggink]

Thanks so much, mvruggink. I believe SSI is different from SSDI, as it's for people without an extensive work history. Is that correct? I worked for as long as I could, full time jobs in banking, advertising, and energy management. Then I worked part time in office administration for as long as I could manage.

I hope this isn't too personal of a question, but how has your AMN been progressing? You and I are both pretty young compared to most on this forum. Feel free to send me a personal message, if you would prefer!

[mvruggink in reply to Aaron98]

Hey Aaron98,

My progression is just getting worse with my walking and movement with my legs. In the past 8 months, it has gotten much worse. I have been under a lot of stress with my ex-wife leaving me and getting divorced in January. Stress is not good for this condition in my experience.

When I get stressed out my muscles tighten up and my nerves are very tense. I have been using a cane for the past year now and it is the only way for me to walk with stability, otherwise, I look like a drunk walking around not fun....

My appointment today with the disability evaluation was not very fun at all... The doctor that saw me today knew nothing about AMN and asked me. "if you have had this all your life. Why are you here now." She knew absolutely NOTHING about my condition and the progression it takes on our bodies. My mother came with me and it was the most stressful day I have had since I had to moved my things back home to live with my parents August 1st 2017.

They told me that I would possibly know more information in 3 weeks at a minimum... This is almost going on 6 months. I understand that it is retroactive but I cannot imagine having to deal with this for 2 years like you said Aaron98.

Mvruggink

[deengo]

sorry to hear about your denial. it's crazy what they do. mine was approved in 3 weeks. I did have big help from my neurologist's assistant. i hope it all works out soon for you. the added stress dies no good.

[Aaron98 in reply to deengo]

You nailed it, deengo. Added stress is right. A close friend of mine with ankylosing spondylitis just received his SSDI disability benefits after being denied twice and waiting well over TWO YEARS. This is unconscionable. He told me that it was only after his eventual approval that he realized how depressed and anxious he had been concerning the process. Every denial is like a slap in the face, a lack of validation for what we experience on a daily basis.

Are your disability benefits SSDI or SSI? How the heck did they get approved that quickly? I've never heard of that happening so fast. Social Security is a horribly broken system.

[deengo in reply to Aaron98]

I'm SSDI. My neurologist at the university of Washington was a big help getting approved. I also have a second nerve disease HNPP which may have speeded up the process. My neurologist was speculating I may be the only one with both diseases.

[Aaron98 in reply to deengo]

Hey deengo, I had no idea you had been to UW! Are you a Washingtonian? Which doctor did you see at University of Washington?

I spoke with my disability attorney's office today. They said all I can do at this point in keep going to my doctors (which of course I would do anyways), and I will probably have a hearing with an Administrative Law Judge in about a year and a half. I'm not happy to wait on this, but I have no other choice. Everyone else with AMN, it seems, has been approved on their initial application.

[deengo]

yep, I grew up in Seattle. I live in arizona now. me and my kids moved here about 9 years aago go. the cold damp winters were killing me. it makes my pain very bad and really hard to walk. I only go up there in the summer time now to visit.

I was seeing Dr. Bird and Dr. Carter at the UW they were the ones that diagnosed me after 2 years of testing. Dr. Bird retired a few years ago.

[Travzw]

I am 26 and have been on disability since I was 20. I applied the first time and put on the application that I was still working. They automatically denied me in a day due to working. So I reapplied and put on there that I wasn’t working. It also really helps if you check the box that says terminal. Even though it’s not terminal, in all reality it technically can be and nobody knows whether that be your case or not. I believe that was the biggest part of my getting mine in a few months.

[mvruggink]

I just got my denial letter for SSDI. it was my first time going through this.. Just thought I would let you know Aaron98

[Aaron98 in reply to mvruggink]

I'm so sorry to hear that, mvruggink. On the one hand, it is nice to know that I am not the only person with AMN to have been denied (because it truly seemed that I was the only one). But of course, I feel terrible that you have to go through the denial process. Please keep us updated for how this goes.

[mvruggink in reply to Aaron98]

I will let you know. I am going to appeal this. I guess i will be going in front on a judge i think. I dont know this whole process is new to me.

[Magnolia209]

I was also denied twice and then was told about Allsup who I had never heard of. I called them, sent them my medical records and they took care of everything. I was approved with several years back pay. Of course they took a percentage but by then I was just happy to be approved.

[Aaron98 in reply to Magnolia209]

Hi magnolia209 - how long did the whole process take for you? Did it take 1 - 1.5 years after your second denial to get a hearing with an administrative law judge? Or once you contacted Allsup, did they start the process all over for you? I hope my disability attorney is capable of getting me approved once I get my court date.

[Magnolia209 in reply to Aaron98]

Hi Aaron98, I never had to appear for the hearing, Allsup took care of all of that. It's been 10 years ago so I don't remember exactly how long it took, but it was just a matter of months...I'm saying 4-5 maybe when I got my 1st payment from SSDI. It was really a smooth and easy process for me once I turned it all over to Allsup.

[Aaron98 in reply to Magnolia209]

I'm glad it went so well for you. As I mentioned, I am now essentially in a holding pattern for the next year to 18 months until I can get a hearing with the ALJ. If for some reason I get denied then, Allsup will definitely be my next call.

[TrueHelper in reply to Aaron98]

Hi Aaron98. I manage Allsup's social media, and ran across this thread. We hope you get approved at your hearing. This link may be useful as you wait for your hearing date. It is info on how to prepare for your hearing. Best wishes. bit.ly/TrueHelpSSDIhearing

[Aaron98 in reply to TrueHelper]

Thank you for sharing this, TrueHelper. I appreciate the information in the link.

It's quite a frustrating experience, for several reasons. My attorney submitted information to the adjudicator who was making the disability determination during the first appeal, and some of that paperwork never made it into my file. I had contacted the adjudicator, as well, to let them know that they were missing information, but they went ahead and made the determination anyways. I asked my attorney if there is anything I can do about this, but they told me that all we can do is wait for the next stage of the appeal process. Is this correct? Is there really no way to call out an adjudicator for incompetence?

You must have a lot of experience with this, but the system just seems so inefficient and broken. Is there any other insight or encouragement that you can share?

[SongStream]

I am one with AMN that was approved the first time with SSDI. I had included a stack of scientific paper and lab tests which documented and supported AMN along with my application. That and a personal letter from my long time endo indicating the manifestation of my disablement.