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  • Doctors refuse to write letters

    I am currently working with an attorney filing for disability. I have had IC for many years and the last 4 have been horrible. I see a primary doctor, urogyn, pain specialist, and psychiatrist. Everyone has said things like "you should be on disability," and "why aren't you on disability?" But then when i ask them to help with my case, they all say it's aginst their policy to write letters for SSI a or assist with a case. The nurse practitioner that does my weekly instills even said its useless to try since IC is not on disabilities list of approved diagnosis. My attorney is at a stump, and thinks they are scared to get involved because they think they might get depositioned to court. Has anyone won a disability case without anything from their doctors saying they can't work? To make matters worse, my husband got fired and is unable to work anymore in his career of 23 years. Over trying to help someone. So we have no income. Since we have retirement accounts and own a house/cars, we can't get any other assistance. Guess the retirement accounts are getting sold now at a big loss.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  • #2
    Re: Doctors refuse to write letters

    I have read that interstitial cystitis is on the list of acceptable diagnoses for Social Security Disability. You might want to consider asking your doctors if they will write letters indicating what accommodations would be required for you to be able to hold a job --- that wouldn't mean they would be involved in a potential court case. Another thing you might consider is getting copies of your medical records from every one of your doctors who have treated your IC or helped with pain control. If you lost your job due to being absent too much due to your IC, that can help as well. You might also try taking copies of your records with you to different doctors to see if you can get some support with your claim.

    It's tough about your husband; I hope he's not physically disabled so he might look at other careers just to be able to have insurance and get by.

    Sending encouraging thoughts,
    Donna
    Stay safe


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    • #3
      Re: Doctors refuse to write letters

      I will type a response as somebody on disability by now. I even left my last job on retirement disability.(after 15+ years) OK. I am not on disability simply because of IC, but that is part of why I get a favorable decision. (after a hearing with an administrative law judge) OK. IC is supposed to be considered a disability, but it is still hard to get SSD on that alone.(as I have got degenerative disc disease, spinal stenosis, osteoarthritis, history of falls and fatigue, and often use a cane) Oh! I do realize many people with IC don't just have IC only to begin with. (as in other diagnoses as well) I actually had letters and reports from several doctors.(even some that did not help my case) By the way, I did not have problems getting any of the reports, either.(or my lawyer) If you don't get any statements from doctors, then you won't have a good chance of winning.(although I got denied more than once) (unless you have got an obvious, clear cut disability) OK. It is raining now, and I feel like I was beat with a 2x4; therefore, I am gonna let that be all now.
      statesboro
      ICN Member
      Last edited by statesboro; 03-14-2015, 04:57 AM.

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      • #4
        Re: Doctors refuse to write letters

        About 10 years ago when I was married I applied for disability based on IC alone & was denied the first look. Got a lawyer. It dragged out. Divorce happened & I was forced to go back to work. It was that or be homeless.
        One year after being at my new job I got an email that social security had set up a court date for my case.

        My lawyer said we should go bcus they could still approve it & award back-pay.
        The judge approved it immediately. They back-payed me the 3 years it took to get approved. TN has an average waiting period of 3 years. They are that backed up.

        No way I could wait for that $ these days. So I work & am barely hanging on using intermittent FMLA.

        Anyway it IS possible on IC alone.
        I had tons of medical records showing my case was severe. The system is very flawed.
        Jeannie
        "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

        IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

        Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

        Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

        Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
        As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

        Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

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