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Intro and require a little direction please-sorry..

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Unread 02-01-2013, 11:41 AM   #1
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Default Intro and require a little direction please-sorry..

Hi, I am David. I thought perhaps this is a good place to be for me.
I had (overseas) what they believe was untreated encephilitis (via sinuses) and as result have damage to temporal lobe (via mri-not on older mri's), probable frontal lobes (neurpsyche tests), and definite cns damage, i.e. central pain, neuropathy, other related (pain, fine motor, cognitive, memory, mood, personality, type of dyslexia, vision (unless it was those Grateful Dead concerts in my twenties-kidding). I have other problems, also 3 [past pos emgs (upper, motoro and sensory)-now negative, herniated disc and sciatica, PHN (that's considerably faded), and other. I am unsure what I am classified as here. They sent me to MS specialists, however this is not ms and remains stable unless a later mri has changes.
It takes me time to write and respond, I forget what I am writing (attention is problem), and keep chickening-out when looking for help. It took me a number of years to get diagnosed having been overseas (it is consistent amongst all US neuros involved). My last appointment my diagnosis was reconfirmed, I was told my prognosis, and that there is little they can do, and see you in four months. I am however, fortunate that whatever occured is stable. Between negligent (understatement) attorneys and disability offices in two countries more concerned about their budget and being particularly dishonest (not just incompetent-really) in my case, I am about burned out. I undertand my story does not sound atypical, amd I am certain much of it is not., however I expect a few components are.
I have received SSDI and SSI now (until hopefully overseas cae is rsolved and I don;t require SSI-via social security treaty). I have been disabled since 2008, they los my rcords several times, then they were "inadvertently delted from the main computer", then my birhtdate kept being changed to incorrect date even though I kept resolving this(even via new SS card), then there are numerous lies, i.e. SSA first denial was based on a pile of medical records they claimed to have, however I acquired documentation that SSA requested the records with wrong birthdate, informed SSA of this and refused to give records(but told them they only had wrong birthdate) and instead SSA wrote they had the recors and utilized them for decision. They rwefused to correct this. Now the changed records and claim I quit my SSDI claim years back and just reapplied with SSI claim when I returned to US. This is not true and I even have their records showing it is not. They didn;t resolve this either.
I had two attorneys in a row who informed me they would acquire all new tests and neuro reports, capacity evaluations, and all of my pyshcians fully cooperaitve stating my brain damage was enough for full disability ad I had enough objective-not just clinical findings. I also had foreign records that required translations and was beiung handled by each attorney. Both did nothing to the end. I was called the night before hearing and told the judge called (my attorney) and I was offered a late onset date (years later), that my back was reason for disability, and that I accept much less money. But also I was told SSA judge would not tell me whether or not I was indeed qualified for SSDI and what I would be potentially giving up if I took the "plea bargain". I asked my attorney what my chpice was and he said if I went to court the next day the judge coule very well change his mind and say no.
I had even collected the medical dociuments that my second attorney did not collected (and had them for the following day;s hearing) and actually the "plea bargain" call came coupl hours after I called my attorney and informed him that I learned he did not gather any documemnts at all, never spoke with any physcians, and di nothing he promies to do. I told him i would bring the medical documents to court next day. I asked him aboyt translations for court and he said they utilized a computer translater for the records (I don;t think these are admissable).
I took the "plea bargin". I was nervous and knew I could appeal and requested that I know abot the SSDI otherwise I don;t know what I am appealing. The advisor for me at SSA/I informed me that (quote) "in a plea bargain" you don't always know everything, you just have to take the deal or not take it. They actually called it plea bargain...I had plea bargin for my pension. Perhaps this sounds socialist, me wanting what I earned, and wanting accurate records.
Now SSA did not pay me full retroactive and claim to statement from my parents stating I did not pay them sufficient share of bills (they claim it says 100/month-this never occured-really-not even by accident), and that I did not have the cash assistance from the state I had (I called and the records at DHS computer were not accurate and had to get copy released from accounting, but they said they can;t fix computer error and the printout they sent me does not have my name or SS#, or any letter attached_. The advisor at SSA refuses to speak to me and sent me another form (this keeps occuring) already filled out and demanding signatiures from my parents and witnesses, yet she places all wrong numbers in. She did this before and had my parents fill out paperowkr incorrectly (nothign to do with 100/motnh thing), and make corrections, then used this to say we refused to send the documents she wanted, yet she send one form (said see next page) and never sent the next page. Se said that was ok. The same woman now accuses us.
Ok, that's the gist and sorry to vent. I don;t know where to go. If anyone has braain lesions/damage then they understand writing this is like "tryin to thread a needle". navgiating my mess right now has placed me on overload. Not short of being dramatic. If anyone made it to the bottom of this post, and has any advice, or which forum area to go to (I get a bit lost) it would be appreciated.
I tried getting my attorney to respond in writing, aboyt my medical records, translations, and having know he took case from another poor attorney, anyway, he won;t respond and eludes subject. he admitted they made big mistake verbally but also confirmed he won;t tell me this inwiritng, which means if I wanted to sue him, he would more than likely lie. The decisipmn here is consequential to my overseas cases, eu perm residency passport, dsability, etc. etc. The attorney also told me not to worry aboyt what the judge utilized as reason for disability, he said "it's not like you're going to get your back fixed-heh...I would have liked this option-for fairplay sake. srory...and thansk. I don;t have much support network anymore, having been overseas for many years, I can;t right impose (and don;t want to) on even my closest of friends. I want to delete this but here I go...
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Brain patch (02-09-2013), Kitty (02-01-2013), MelodyL (02-01-2013)
Unread 02-01-2013, 12:04 PM   #2
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Hi and welcome to NeuroTalk.

I've posted several links to forums that might be of help to you. Have a look around the site and feel free to visit any forum you feel might offer assistance. We're all here to help each other.

Traumatic Brain Injury & PCS Forum:

Peripheral Neuropathy Forum:

General Health & Rare Disorders:

Social Security Disability:
Multiple Sclerosis (MS)
Dx October 2005


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RowDavid (02-01-2013), Rrae (02-03-2013)
Unread 02-01-2013, 12:18 PM   #3
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Default Thank you...

In retrospect, had I waited a half hour, would have written that in four or five sentences. Thank you and kind regards-
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Unread 02-01-2013, 01:51 PM   #4
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Welcome to NeuroTalk. We're so glad you found us.

I see you've been directed to all the forums you'll need. Feel free to post as much as you want.

You will find the people here to be friendly, helpful, and caring.

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Unread 02-01-2013, 07:53 PM   #5
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Hi. I see that you have been given all the right forums. I just wanted to stop by, say howdy and Welcome!!!

So....Howdy and Welcome!!!

We are a very nice bunch of folk here at Neurotalk. You'll meet lots of new friends. We don't care about your spelling or what you write. So don't worry.

Take care, Melody



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Unread 02-02-2013, 02:09 AM   #6
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Wink Nice to meet you!!


It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Looks like Kitty has given you some wonderful forums to help you come up with some great help. Have fun checking into them.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


"Life without God is like an unsharpened pencil -- it has no point.
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Unread 02-03-2013, 12:38 AM   #7
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Smile Hi David!

I'm very glad you didn't delete your introductory post.
You are certainly at the right place for venting and reaching out for support.
There are many caring people here and alot of great information in the forums.
You've really been thru the runaround.

There's alot of helpful info here. The SSDisability forum is a great place for info and support.
You certainly are not alone!
It's great to have you,

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Unread 02-09-2013, 08:09 AM   #8
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Default I understand what you are going through

I have traumatic brain injury too. I understand what you are going through and how hard it is to communicate. I just wanted to tell you your not alone. My prayers are with you. At least you got disability. I am having to file a new claim. It is so hard to make anyone understand how little functioning I have. I have finally figured out the right kind of doctor to go to. Now have a diagnosis from a neurologist/movement disorder specialist. Have to go for neuropsychological testing. Hopefully I will get disability now. I am exhausted from just typing this so talk to you later. Hang in there. Love and support .
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