Worse and off work

    • Anonymous
      January 6, 2011 at 10:04 pm

      I was diagnosed in 2000 with CIDP and it has been reconfirmed by my neuro and 3 trips to Mayo. I have spent many years relapsing and remitting on a variety of levels. Each rebound is never quite as back to “normal” as the last.

      This last year progression on my arms and hands picked up speed. After many years of regular treatment of IVIG, Lyrica, and Cymbalta – we have really run through other options.

      I have also taken steriods both oral and IV and cellcept along with a variety of other drugs for pain etc. but this time my normal does not seem to be coming back.

      I wrote on the board several months ago that I developed carpal tunnel which continued to get worse to the point that I could not take care of myself and then operated on Dec 22 on both hands. I have to say I have a less pain in one way but left with severe weakness, numbness, and surgery pain.

      I am facing full disability for the first time. Over the years I have gone back and forth to work but I teach and moved to teaching online but not being able to use my hands makes that almost impossible.

      I am looking for advice on applying for social security and also for coping with the fact that I can’t continue in a career I love!

      Thanks everyone!

    • Anonymous
      January 6, 2011 at 11:29 pm


      I am sorry to hear that things aren’t going well for you.

      I was a teacher assistant so I know the passion you have for teaching!

      My doctor signed me off onto disabilty with me fighting all the way trying to be tough and thinking I’ll beat this CIDP…

      Well I have been off for over a year and the quality of my life is much better.
      I can rest when I need to and when I am well I can go into the school and help out for a couple of hours. There is no way I could go back working. Even after 20 minutes sometimes I have to leave due to pain.

      I hope you can get the answers you need and that if you do go off on disability you try to enjoy the days as they come and know that if you are having a “well” day you can go in and listen to some munchkins read or help in some way.

      Take care
      Rhonda from Canada

    • Anonymous
      January 6, 2011 at 11:42 pm

      The most important piece of info one needs to apply for disability is a letter from a doctor, preferably a neurologist in your case, stating that you cannot work for at least one year. Other documentation is also needed, such as details as to what one can do & can’t do, being very specific. They are less likely to deny a person the older they are, thinking they are that close to retirement anyways. I understand your not wanting to lose your job, I was a teacher as well & still remember so well all of the students I had that last day of my working on April 1, 2002. But I declined very quickly to quad status & nothing was bringing me around. Good luck doing what you have to do…

    • Anonymous
      January 7, 2011 at 12:15 am

      Have you thought about going to Chicago and see if you qualify for Stem Cell Transplant??

      My case was pretty much like yours since 1996. I went for SCT and Im doing much better. Like my sct sis Alice says..”Im cured”. (They dont like us saying that….but its true…lol)

      I know is not an answer to what you are asking us to help you with. It s just a suggestion.

      Take care.


    • Anonymous
      January 7, 2011 at 3:22 am

      I have a history with CIDP similar to what you mentioned. Last year when the pain and tremors in the hands (not to mention the fatigue) became overwhelming I was forced to apply for disability and quit my job as an engineering program manager – sigh.

      Just a couple of quick points from my own experience.
      File as soon as you can, you will be denied, it is almost a guarantee, almost everyone is denied the first time. Before you get your denial letter, find an attorney that specializes in SSDI. The attorney will (should) only take payment from the amount you get from SSI AFTER they help get your disability (atty. Pmt is a portion from date you file to approval of SSDI), this is why you should not wait too long to file. Your disability payment is retro-active from the date you first filed. Warning, if you wait too long to re-file you must start all over again, but the attorney will explain all this to you.

      Good Luck

    • Anonymous
      January 7, 2011 at 10:01 am

      Recommend anybody applying for Social Security Disabilty (SSD) read this Disability Planner:

      and this “How we decide”: [url]http://www.ssa.gov/dibplan/dqualify5.htm[/url]

      On the How we decide page click on “Go to Step 3”:

      and then, click on “…a list of medical conditions…”:
      Under Part III click on “…Part A…”

      then, click on “11.0” Neurological:

      Next, click on 11.14: “11.14 Peripheral neuropathies. With disorganization of motor function as described in 11.04B, in spite of prescribed treatment.”

      so, you end up back at 11.04B: “B. Significant and persistent disorganization of motor function in two extremities, resulting in sustained disturbance of gross and dexterous movements, or gait and station (see 11.00C).”

      and 11.00C: “C. Persistent disorganization of motor function in the form of paresis or paralysis, tremor or other involuntary movements, ataxia and sensory disturbances (any or all of which may be due to cerebral, cerebellar, brain stem, spinal cord, or peripheral nerve dysfunction) which occur singly or in various combinations, frequently provides the sole or partial basis for decision in cases of neurological impairment. The assessment of impairment depends on the degree of interference with locomotion and/or interference with the use of fingers, hands and arms.”

      You might choose to read Section 1, musculoskeletal. The key is to prove the degree of disability. It is not sufficient to say “I have pain or I feel weak”

      Document with test results and Doctors’ reports.

    • Anonymous
      January 7, 2011 at 6:12 pm

      Lisa, I’m sure you have seen all the Lawyer commercials on TV promising to help you get SSI… well I’ve had friends try some of them and they charged too much and they were not much more help then doing it yourself. In fact I know one guy who actually got SSI faster by himself. Well I too was pasturized (as in put out to pasture after I got broke) However, my employer and AETNA hooked me up with a firm and it’s not costing me anything. If you would private email me I will give you the info you need to contact them yourself directly. In either case good luck and I know the position you’re in. I too was not ready to retire or be “pasturized”… but in all reality, I really am…well… broken – just hate to admit it. At least I have my wife and my life and as Martha says “It’s a good thing”, just another speed bump of life… a big one:)

    • Anonymous
      January 8, 2011 at 1:49 am

      Not everyone gets denied the first time they apply. I was accepted for SSD within a week of when I applied via a phone interview. But I had been on short term (6 month) disability from my employer already & was in very bad shape, in a power chair with virtually no use of my hands. It all depends on how bad off you are & if you can prove it?