I want to start the SSDI process..........

[Roxie2007]

But have a few questions......How long do you have to be off work before you can apply?
Do those of you who already have it suggest using an atty? If so, how much did it cost you to use that atty?
Anyone who can help me.......I'd be so appreciative! You can PM me if you'd prefer. Thank you!!

[GriffsMommy]

I haven't had to go through the process yet though I have a strong feeling it might be in my future. I know that there is a lot of info at www.ssa.gov that would probably help you. I'm sure some of the members who have been through the process will be happy to share any info they have. I believe disability lawyers only get paid if you get approved and they get a portion of your pay back as social security owes you from the day you filed even if it takes years to be approved. Of course we hope that wouldn't be the case with you. Good luck!

[callie0767]

if you are on disabilitiy do you have to be on medicaid or another insurance?
courtenay

[GriffsMommy]

I know that you become eligible for medicare once you've been on ssd for two years but I don't think you have to have insurance to be on disability.

[mlzippy7]

Roxie,
I went through the process not too long ago. Feel free to email me if you would like more information. I found most of my information on the website http://www.ssa.gov/. I would be more than happy to help anyone!

[maryla]

Roxie,

I did everything my first 2 denials, which was very exhausting, but i did get a laywer for my appeal to go before the judge, which has taken 4 years now. I go next week for my hearing.

I think if I had it all to do over I would have gotten a laywer from the get-go. Most of lawyers do not get paid until you get your back pay.

I do not have these guys for lawyers but again if I had it to do over, I would of contacted them.....Binder and Binder. I think their site is www.binderandbinder.com From what i hear they are excellant in SS cases.

Keep us posted!

God Bless,

[snowgirl]

I filed on my own on the website that they posted. It takes time but it was well worth it. I had met with a LTD attorney and he said file on line and don't get him involved until I get my first denial. Well, I did all my own filing on my own. Six weeks later I was approved and I am not up for medical review for 5-7 years. That's my experience. Some do it without an attorney and most get an attorney on the first denial. Good luck.

Berkshire Road on this board and forum she knows a lot about this. She will be around.

Good Luck.

Vicky
Do you have a good MD standing behind you to sign and file paperwork that you have IC and how it effects your life?

VN

[mlzippy7]

Vicky is right about having a good doctor stand behind you. I had MANY doctors that supported me. That makes a huge difference.

[Berkshire Road]

Oh, WHOOPS, did someone say I'd be around? :)

Roxie, or anyone else, if you want to talk about this just PM me and I'll be happy to give you my phone number. I studied this in law school, have a sister who is an SS lawyer, and got my approval in three months from start to finish. This is one thing that I can pretty much do, so I always have a hand out to my "IC Sisters."

[maryla]

Wow Carolyn,

I wish I had you around for all my stuff I went through with all the SS stuff!

You are surely a God Send for those of us going through all this.

ps. I have started writing like you suggested for when I go next week to my hearing. It's amazing how different it all looks in writing.......my moments of clarity!

God Bless,

[snowgirl]

She has been a wonderful strength of source for me in other areas then SS disability other issues that come from being disabled.

Carolyn, is a very special person to me and has helped me to try and get out of this depression from losing my nursing career.

Plus she is very intelligent how do you think she became to be a professor!

Vicky

[Berkshire Road]

Thanks :)

[tigger_gal]

I mailed this along with several other of articles with my application, I was approved the first time.

The Pain Facts

Michael Von Korff, ScD, Department Editor

Interstitial Cystitis
Daniel Brookoff, MD PhD; Vicki Ratner, MD

Interstitial cystitis is a syndrome defined by a triad of chronic irritative bladder symptoms (which can include urinary frequency, urinary urgency, or bladder pain); sterile and cytologically negative urine; and characteristic cystoscopic findings, ranging from glomerulations (pinpoint submucosal hemorrhages that are evident after distension of the bladder) to reduced capacity and ulceration of the bladder (Messing, 1992). For the patients, 90% of whom are women (Koziol, 1994), interstitial cystitis often translates into a feeling of having the worst bladder infection of their lives-and one that will not go away. It may mean having a compelling urge to urinate, up to 80 times in a 24-hour period, and intermittent or constant bladder pain.

In most cases, the diagnosis of interstitial cystitis does not take place until several years after the onset of symptoms. The treatments most commonly used by urologists are intravesicular instillations of medications such as heparin, dimethyl sulfoxide (an antiinflammatory agent), sodium oxychlorosene (a detergent), silver nitrate (a caustic), and chromolyn sodium (Sant & LaRock, 1994). Many of these treatments are themselves very painful. Other treatments include tricyclic antidepressants, mast cell stabilizers, pentosanpolysulfate (which can be likened to an orally bioavailable form of heparin), TENS units, physical therapy, and, ultimately, cystectomy (which may not relieve the symptoms). Often, the symptoms will recur or persist after treatment. Reviews of all these therapies appear in the February 1994 edition of Urologic Clinics of North America.

For many patients with interstitial cystitis, pain is a prominent feature of the disease. For some patients, pain becomes the most prominent feature of their lives. A large epidemiologic study found that 55% of patients with interstitial cystitis reported daily or constant pain, and 57% characterized their pain as severe or excruciating (Koziol, 1994). A study at Duke University reported that patients with interstitial cystitis had an average duration of pain of over 7 years and that this pain was more severe than the pain of advanced cancer (Berwick, 1991), leaving the patients with a lower measured quality of life than that of patients on chronic hemodialysis (Held, Hanno, & Wein, 1990). Nonetheless, textbooks on pain management barely mention interstitial cystitis and give no recommendations for treatment. The literature on pain management in interstitial cystitis is virtually nonexistent (Brookoff, in press).

Even though interstitial cystitis was first recognized near the beginning of this century (Nitze, 1907) and was well described a few years later (Hunner, 1914), medical attention has been paid to this syndrome only relatively recently. For years, patients with interstitial cystitis could not get treatment for their condition. Dimethyl sulfoxide, the first drug for interstitial cystitis, did not receive approval from the Food and Drug Administration until 1978. For most of its history, interstitial cystitis has been dismissed as a condition of hysterical postmenopausal females. A standard urology textbook in use until 1985 stated: “Interstitial cystitis...may represent the end-stage of a bladder that has been made irritable by emotional disturbance...a pathway for the discharge of unconscious hatreds” (Walsh, 1979, pp. 1906-1907). This attitude has led to the delays in diagnosis and treatment that are so commonly seen in patients with this disease.

The Interstitial Cystitis Association estimates that interstitial cystitis affects 450,000 people in the United States (Ratner, Slade, & Greene, 1994). This syndrome may have a variety of etiologies (e.g., urinary toxins, bacterial infections, mast cell disorders), which result in chronic inflammation of the urinary bladder. As such, it is an important model for chronic visceral pain and neurogenic inflammation. The frequent overlap of interstitial cystitis with other chronic pain syndromes such as fibromyalgia, irritable bowel syndrome, migraine head-aches, chronic arthritis, allergies, and noncardiac chest pain suggests that interstitial cystitis may be a localized expression of a systemic disorder (Koziol, 1994).


--------------------------------------------------------------------------------
FIGURE 1. Findings of the First U.S. Epidemiological Study About Interstitial Cystitis
--------------------------------------------------------------------------------

It takes an average of 4.5 years and five physicians to arrive at the correct
diagnosis.

For every patient diagnosed with interstitial cystitis, there are five symptomatic patients who have not been diagnosed.

The median age of onset of symptoms is 40; 25% of patients are under 30
years of age.

50% of patients with interstitial cystitis cannot maintain full-time employment because of disease-related disability.

--------------------------------------------------------------------------------
SOURCE: Held, Hanno, & Wein (1990).
--------------------------------------------------------------------------------
Daniel Brookoff is clinical associate professor of preventive medicine in the Department of Medical Education at Methodist Hospital, University of Tennessee, Memphis. Vicki Ratner is president of the Interstitial Cystitis Association (PO Box 1553, Madison Square Station, New York, NY 10159-1553).
References


Berwick, L. (1991, March). Interstitial cystitis patients may require specialized team care. Urology Times, 1.

Brookoff, D. (in press). The causes and treatment of pain in interstitial cystitis. In G.R. Sant (Ed.), Interstitial cystitis. Philadelphia: Raven Press.

Held, P.J., Hanno, P.M., & Wein, A.J. (1990). Epidemiology of interstitial cystitis. In P.M. Hanno, D.R. Staskin, & R.J. Krane (Eds.), Interstitial cystitis (pp. 7-15). London, England: Springer-Verlag.

Hunner, G.L. (1914). A rare type of bladder ulcer in women: Report of cases. Transactions of the Southern Surgery and Gynecology Association, 27, 257.

Koziol, J.A. (1994). Epidemiology of interstitial cystitis. Urologic Clinics of North America, 21, 7-20.

Messing, E.M. (1992). Interstitial cystitis and related syndromes. In P.A. Walsh, A.B. Retik, T.A. Stamey, & E.D. Vaughan Jr. (Eds.), Campbell's urology (pp. 982-1005). Philadelphia: W.B. Saunders.

Nitze, M. (1907). Lehrbuch der Cystoskopie: Ihre Technik und Klinische Bedeutung. Berlin: J.E. Bergman.

Ratner, V., Slade, D., & Greene, G. (1994). Interstitial cystitis. Urologic Clinics of North America, 21, 1-5.

Sant, G.R., & LaRock, D.R. (1994). Standard intravesical therapies for interstitial cystitis. Urologic Clinics of North America, 21, 73-83.

Walsh, A. (1979). Interstitial cystitis. In J.H. Harrison, R.F. Gittes, & A.D. Perlmutter (Eds.), Campbell's urology (pp. 1906-1907). Philadelphia: W.B. Saunders.

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[Berkshire Road]

Those are good; of course you can send whatever supporting evidence you like. Since SSA now has a Ruling on IC (it refers to the research and concludes that IC is a potentially disabling condition) it's probably not necessary to send anything but a copy of the Ruling. (Yes, it's their own document, but they have hundreds of Rulings and you can't assume that your caseworker is familiar with the one that applies to your situation :)) Actually, the Ruling specifies that it is not necessary to have a cystoscopy of any kind, nor any other specific test, in order for an IC diagnosis to be valid.

A lot of us were approved immediately; however, some who you would think would be very clear cases, had to wait all the way until their final appeal in front of the judge (this can take from two to four years). Nobody offering advice here, and no lawyer or professional document preparer, can guarantee your outcome. All anyone can do is try to maximize your chances.

Good luck to all.