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California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
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Social Security Disability Update Report

Discussion in 'Finances, Work, and Disability' started by BEG, Mar 3, 2010.

  1. BEG

    BEG Senior Member

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    Has anyone received a request like this recently from Social Security? After nine years on SS Disability, I received this form in the mail. They want diagnosis, month, year for every doctor visit for the last 24 months. Since I keep good calendars and file everything, it was a no brainer. However, this could lead to a full medical evaluation. I would like to hear of others' experiences with this form.
  2. jackie

    jackie Senior Member

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    Hi B.E.Girl! I received my "permanent" s.s.disability in 2000. In all this time I haven't heard from them or received anything in the mail. Fortunately (I guess) I've had the same PCP for the last 20 years...and he was the type that WANTED me in for monitoring every 6-8 weeks....until this past Dec. (when my Ins. dropped him and assigned me another dr., who is VERY supportive and even knowledgable about ME/CFS!)

    Now I'm glad my former doc required that frequent interaction!(although I hated having to get out of bed so often to go in!)

    I also see (every 3 months), both a Neurologist and an Infectious Disease Specialist...and am on long term high dose AV'S..and about to add Tagamet for viruses (chronic shingles).

    The only aspect that worries me a bit is that when I was first dx'd and applied for disability (after the 2 year wait of not being able to work) I was told I had FM and CFS. Over the years, as I began to see additional doctors (my I.D. Doc in particular) the dx of "ME/CFS" due to chronic enteroviruses, and OI was added.

    Now...if I get a form like yours in the mail...will I complicate matters by ADDING to the original dx? I suppose I may not have a choice...if my doctors have to fill out any forms....they will be adding that info, along with the AV meds, too.

    Did they ask for your Doctors reports/files...to deal with them directly?

    Oh no!...I just remembered ...the Neuro has recently dx/reversed dx/reversed it BACK!...MCI (Mild Cognitive Impairment...a pre-cursor to early dementia - even gave me a prescription for Aricept)...which I, of course, tend to disagree with - instead preferring to believe that I have cognitive/memory problems due to the ME/CFS. I'm not ready to consider the alternatives, yet!

    I'm very interested in what transpires for you! (and what might be in store for me!) Please keep us up to date with your situation, if you can.

    Regardless, as for me, I'm much worse than I was when I first applied for SSDI. I'm housebound/bedbound, ONLY (literally) leave for dr. appointments, (no market, shopping, entertainment, socializing...I go nowhere), am a 2 on Bell's scale...and although the heavy Antiviral use has improved the Memory/cognitive problems (anyway, they have in my opinion)...I've had no improvement in any other area...and this has been regularily documented. (although I AM nearly ten years older now!...and bound to have declined some)

    It's a bit scary, having read of others "horror stories" with clue-less investigators and unsympathetic judges! I never even had an in-person interview...just filled out the original forms, turned over MANY medical records, test results and talked to someone on the phone for about 5 min...and was approved on the basis of that.

    Well...I sure hope things work out for you! I'm sure you don't need the added stress of the unknown...do you feel confident that your disability will be continued?

    (BTW...Did the "form" say what it was FOR? I'm located in California....don't know if that makes any difference.)

    Keep in touch! jackie:Retro smile:
  3. caledonia

    caledonia

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    Cincinnati, OH, USA
    Everyone gets reviewed periodically. There are three schedules - 1 year meaning improvement expected, 3 years meaning they think you may or may not improve, and 5 years - improvement not expected. A lot of times they run late on doing these reviews. My 3 year review arrived at 4 years for example.

    If you're lucky you get the short form CDR - just a few questions on one sheet. This is read by computer. You shouldn't make any comments or stray marks - anything that would cause a human to have to read it. It may lead to you getting the full review. If you're unlucky, you'll get a full review, which is a bunch of paperwork similar to what you filled out with your initial claim. I got one of those too, a year after the short CDR.

    The good thing is now the burden is on them to prove you're no longer disabled. So unless you tell them you're back to working full time, you should pass with flying colors. I didn't get any response from my short form CDR. They just kept paying me so I figured I was good. I did get a letter back saying I was approved from the full review.

    It's also a good idea to keep seeing your doc twice a year, to accumulate continuing documentation of your illness.
  4. BEG

    BEG Senior Member

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    Southeast US
  5. BEG

    BEG Senior Member

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    Hi Caledonia,

    It is a relief to know that this is standard procedure for SS Disability. It took me 4 extra sheets of paper to list all appointments for the 24 months they requested. During that time, I had a lot of knee pain and plantar fasciitis. Both problems required a multitude of visits and lots of injections. However, neither of these conditions is disabling. By the time the next year came, I rarely went to the doctors at all because I simply couldn't get there. I went for routine physicals only. It was the worst year I've experienced yet. Unfortunately, there is little documentation of the fact except my complaints to my primary doc during a physical.

    Trying not to worry.

    B.E.G.
  6. jackie

    jackie Senior Member

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    B.E.G.....Nice to "see" you again! (I know you've been absent a bit...me, too!) Hi Caledonia! have some questions for you (will ask in the next post...I know you are very knowledgable on this subject!)
    Interestingly, I've noticed that my Docs check off THREE boxes of the "ICD" codes on my office visit/lab paper work.
    #1. "780.7 - Fatigue - Chronic/Other"
    #2. "729.1 - Myalgia/Myositis"
    #3. "079._ - Viral Infection"
    Maybe this info will help you?

    One of my docs dx is "CFS/FM, anothers dx is CFIDS, and anothers dx is ME/CFS! Although I fought one of them (my PCP) long and hard for about five years to try and have "ME/CFS" put in my charts...it was my meager effort at "Advocacy"...he couldnt as there IS no billing/ICD code for THAT)...I finally gave up as he did AGREE that this was what I had! Since I'd been taking heavy duty AV's for a long time as prescribed by my I.D. Doc (for Viral activity) it would have been difficult to discount a viral dx. Now, as long as "we" all arrive at the same place (and I get a little Treatment)...I'm happy! oops! just noticed that my Poms are waiting for breakfast!...I'll finish our convo in a bit! (have more comments/questions for you both!)
    Thanks......jackie
  7. Carrigon

    Carrigon Senior Member

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    The last time I came up for review, I wrote them a huge long letter describing everything I go through with this disease. I described it all, the flares, all the things I can't do in life, I told them I'm suicidal every day. Whatever I said worked, they sent me a letter back saying I didn't need a medical review. I don't know when I'll come up again, but I'll send them another letter when I do and see how it goes. Obviously, if I haven't gotten well in nineteen years, it's just plain not going to happen anytime soon.
  8. BEG

    BEG Senior Member

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    Hi Carrigon, When you wrote your letter, did you send it in replacing their standard form asking for the diagnosis and date? Or were you under a full medical review when you wrote it? Since I've submitted the update report as requested, I think I'll wait to hear before I send in a letter. If they request the full medical update, then I'll write the letter. I guess that would be the thing to do.

    Thanks for writing.

    B.E. Girl
  9. BEG

    BEG Senior Member

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    Jackie, My primary care physician doesn't check the ICD codes. (Must be done by billing?) He writes a short diagnosis. Like you, I've had to educate a little bit. At my physical a year ago, he DID write Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and Fibromyalgia. Stupid me, when I filled out the disability form, I wrote "Physical Exam." Oh well.
  10. arose

    arose Guest

    Hello there.


    I see we live in the same city, Would it be possible to chat? I need some advise.PLEASE?

    Thanks,
    Arose
  11. Victoria

    Victoria Senior Member

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    Regardless of where in the world you live, or what your symptoms & severity is, I guess the important thing is to ensure a Medical Professional of some kind reviews or sees you at regular intervals & you keep good records yourself, (as well as the Dr).

    A regular "pain/symptom/personal" diary helps too.

    Eg. I had a severe headache yesterday afternoon (& evening) & wrote that in my diary. The fact that I went for a walk in the public gardens & then to the chemist/pharmacy is not relevant, but the fact that I had a bad enough headache to take 2 really strong prescription strength analgesics as I couldn't think straight at one stage, IS important. I don't take analgesics as often now I'm not working & can manage my pain levels better most days.

    Keep copies of everything. You never know when you are going to have to show proof.
  12. BEG

    BEG Senior Member

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    Victoria,

    I found that the diary was very helpful at my disability hearing. I had forgotten so much in the 2 1/2 - 3 years that transpired between application and hearing. With the update report, my calendar and the copies one gets after a dr. visit were indispensible. Those two items formed the basis of the entire update report requested by the SSA. Going forward, I'll be much more cognizant of doctor notes and won't hesitate to request them and ask for needed changes if any exist. Hope your headache is better. Perhaps you've read too many jokes. :cool::Retro wink::rolleyes:

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