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  • My urologist wrote this up...

    I actually PRINTED OUT this page (thank you for providing it!), marked it up, and gave it to her:

    http://www.ssa.gov/OP_Home/rulings/d...-02-di-01.html

    This turned out to be a good idea. She is VERY busy, but with the printout in front of her, she dictated this letter to the SSA:

    To Whom it May Concern,

    This letter is on behalf of Tara McMullin. It is subsequent to the letter from October 06, 2010. Since that time, I understand she has been denied social security disability. I saw her in the office on March 02, 2011. At that time, we discussed her ongoing problems including severe bladder pain and pain throughout her body including migraine headaches. For this, she does take medications that affect her memory and her ability to concentrate. The pain from her bladder radiates into her groin and down her legs. She is on multiple medications to help with these issues.

    As I stated in my letter from October 06, 2010, she has been a patient of mine since February 2007. I am treating her for interstitial cystitis. She does have the urgent need to urinate with pain in her bladder and surrounding pelvic organs. This causes extreme distress. She modifies her diet severely to try and help improve her situation, but does have full body pain randomly. I did a procedure in September 2007 where we scoped her bladder and then did a hydrodistension. She did have some glomerulations in her bladder at that time. She also had absence of any other signs in her bladder that would be causing these symptoms. There was no evidence of any bladder cancer. A bladder biopsy did show chronic inflammation as well as mast cells which go along with the diagnosis of interstitial cystitis.

    Interstitial cystitis can cause disability for many of its victims. It can cause the inability to engage in any substantial gainful activity because of the physical and mental impairments. Again I do think that Tara is motivated to work. She has tried to work through this but with her mental fogginess and difficulty with concentration associated with this chronic pain and the treatment thereof; I believe she is unable to perform any work on a regular basis. It does cause extreme pain and fatigue. She also feels her interstitial cystitis has worsened her posttraumatic stress disorder and anxiety symptoms. She is currently seeing a neurologist and a psychiatrist to help with these as well but Id o think everything has worsened due to this disorder. It has even affected he social life and limited activity overall. Please give her reconsideration for her plea for social security disability.

    Sincerely,

    Lisa Stout
    Middleton Urological
    Salt Lake City, UT

    ----

    So, I can't wait to get denied again. That will be a day worth celebrating - I'll celebrate with wine...JUST KIDDING!!!
    Exposure to an unclean hot tub 2-17-07 FIRST UTI
    (Got ringworm-like sores from it before)
    (Someone else got what looked like 'eye herpes')
    (My husband got an ear infection. We were all just sitting there!)
    SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
    TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
    Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
    CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
    MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
    PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

  • #2
    If I were the judge I'd be in tears. Sounds real good. The only thing she missed is that you will probably not see improvement anytime soon if ever, need access to a bathroom at all times, need frequent breaks, maybe every 15 minutes, etc. If you get denied again, which you may not, they may be things to add in. The mental fogginess is so very true, it's all you can think about and not be able to focus on much of anything. You can't be a receptionist with this and have to say "can I put you on hold for a moment, gotta GO." Or waiting on a customer in a retail store and saying "excuse me for a moment, gotta GO." The most basic jobs become impossible. Even something like McDonalds would be a nightmare, your fellow employees would not let you get through a day without complaining about you. Along with your other medical issues, it sounds hopeful, and your doc is working with you which is so very helpful. Sure the SSA has your medical records by now. Just try to remember these are laymen who are doing the initital denials, they just go by the book so to speak. It is their job to deny. We went through 2 denials and had an empathetic judge who did not even require us to appear. Emphasize your other medical issues as well as your IC. Wish you much luck, do not get discouraged, it takes some time.

    Comment


    • #3
      Thanks!

      With my willingness to self-instill daily and stick to the diet, I was doing ok in the workplace until the fatigue, dizziness, memory loss and migraines hit. It was like being hit by a brick wall - all about a year ago. I wonder what that's all about, anyway? Another auto-immune response to whatever weird virus got me...now FOUR YEARS ago? WHAT NEXT? My biggest fear is losing the ability to stand up for myself and fight for SSA benefits... I'm fading pretty fast.
      Exposure to an unclean hot tub 2-17-07 FIRST UTI
      (Got ringworm-like sores from it before)
      (Someone else got what looked like 'eye herpes')
      (My husband got an ear infection. We were all just sitting there!)
      SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
      TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
      Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
      CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
      MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
      PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

      Comment


      • #4
        I would say you have a wonderful, caring, physician.

        Good luck with your appeal!
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Originally posted by Taramc View Post
          I actually PRINTED OUT this page (thank you for providing it!), marked it up, and gave it to her:

          http://www.ssa.gov/OP_Home/rulings/d...-02-di-01.html

          This turned out to be a good idea. She is VERY busy, but with the printout in front of her, she dictated this letter to the SSA:

          To Whom it May Concern,

          This letter is on behalf of Tara McMullin. It is subsequent to the letter from October 06, 2010. Since that time, I understand she has been denied social security disability. I saw her in the office on March 02, 2011. At that time, we discussed her ongoing problems including severe bladder pain and pain throughout her body including migraine headaches. For this, she does take medications that affect her memory and her ability to concentrate. The pain from her bladder radiates into her groin and down her legs. She is on multiple medications to help with these issues.

          As I stated in my letter from October 06, 2010, she has been a patient of mine since February 2007. I am treating her for interstitial cystitis. She does have the urgent need to urinate with pain in her bladder and surrounding pelvic organs. This causes extreme distress. She modifies her diet severely to try and help improve her situation, but does have full body pain randomly. I did a procedure in September 2007 where we scoped her bladder and then did a hydrodistension. She did have some glomerulations in her bladder at that time. She also had absence of any other signs in her bladder that would be causing these symptoms. There was no evidence of any bladder cancer. A bladder biopsy did show chronic inflammation as well as mast cells which go along with the diagnosis of interstitial cystitis.

          Interstitial cystitis can cause disability for many of its victims. It can cause the inability to engage in any substantial gainful activity because of the physical and mental impairments. Again I do think that Tara is motivated to work. She has tried to work through this but with her mental fogginess and difficulty with concentration associated with this chronic pain and the treatment thereof; I believe she is unable to perform any work on a regular basis. It does cause extreme pain and fatigue. She also feels her interstitial cystitis has worsened her posttraumatic stress disorder and anxiety symptoms. She is currently seeing a neurologist and a psychiatrist to help with these as well but Id o think everything has worsened due to this disorder. It has even affected he social life and limited activity overall. Please give her reconsideration for her plea for social security disability.

          Sincerely,

          Lisa Stout
          Middleton Urological
          Salt Lake City, UT

          ----

          So, I can't wait to get denied again. That will be a day worth celebrating - I'll celebrate with wine...JUST KIDDING!!!
          get a lawyer they will work for a small percentage of your claim.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Originally posted by Taramc View Post
            I actually PRINTED OUT this page (thank you for providing it!), marked it up, and gave it to her:

            http://www.ssa.gov/OP_Home/rulings/d...-02-di-01.html

            This turned out to be a good idea. She is VERY busy, but with the printout in front of her, she dictated this letter to the SSA:

            To Whom it May Concern,

            This letter is on behalf of Tara McMullin. It is subsequent to the letter from October 06, 2010. Since that time, I understand she has been denied social security disability. I saw her in the office on March 02, 2011. At that time, we discussed her ongoing problems including severe bladder pain and pain throughout her body including migraine headaches. For this, she does take medications that affect her memory and her ability to concentrate. The pain from her bladder radiates into her groin and down her legs. She is on multiple medications to help with these issues.

            As I stated in my letter from October 06, 2010, she has been a patient of mine since February 2007. I am treating her for interstitial cystitis. She does have the urgent need to urinate with pain in her bladder and surrounding pelvic organs. This causes extreme distress. She modifies her diet severely to try and help improve her situation, but does have full body pain randomly. I did a procedure in September 2007 where we scoped her bladder and then did a hydrodistension. She did have some glomerulations in her bladder at that time. She also had absence of any other signs in her bladder that would be causing these symptoms. There was no evidence of any bladder cancer. A bladder biopsy did show chronic inflammation as well as mast cells which go along with the diagnosis of interstitial cystitis.

            Interstitial cystitis can cause disability for many of its victims. It can cause the inability to engage in any substantial gainful activity because of the physical and mental impairments. Again I do think that Tara is motivated to work. She has tried to work through this but with her mental fogginess and difficulty with concentration associated with this chronic pain and the treatment thereof; I believe she is unable to perform any work on a regular basis. It does cause extreme pain and fatigue. She also feels her interstitial cystitis has worsened her posttraumatic stress disorder and anxiety symptoms. She is currently seeing a neurologist and a psychiatrist to help with these as well but Id o think everything has worsened due to this disorder. It has even affected he social life and limited activity overall. Please give her reconsideration for her plea for social security disability.

            Sincerely,

            Lisa Stout
            Middleton Urological
            Salt Lake City, UT

            ----

            So, I can't wait to get denied again. That will be a day worth celebrating - I'll celebrate with wine...JUST KIDDING!!!
            I will be praying for you! I know how you feel to not be believed and it is horrible! God believes you and your in my prayers! Blessings... Good luck! : } Dont give up!
            Last edited by [email protected]@glie1; 03-17-2011, 01:09 PM. Reason: spelling
            [email protected]@glie 1 :woohoo:

            Comment


            • #7
              Don't give up and for goodness sake, do not "fade away." If you don't have a lawyer, get one. They know the ins and outs and will take a lot of pressure off of you now, when you need that the most.
              It is really, really difficult to go through the process without one, and takes much more time. Good luck, don't let them beat you down, they want you to give up. That's YOUR money sitting there. Go get it! Jill, wife of Bob
              Last edited by ICNDonna; 03-19-2011, 06:59 AM.

              Comment


              • #8
                Lisa.. This is an old response but did you ever win your case?
                [email protected]@glie 1 :woohoo:

                Comment


                • #9
                  Yes

                  I got disability on the second try. I had ALL my doctors write on my behalf, except for a neurologist who refused to do it. I replaced him. My benefit isn't enough to live off of, but I have my eyes on an easy part time call center job and I'm going for my first interview next week. Fingers crossed!!!
                  Exposure to an unclean hot tub 2-17-07 FIRST UTI
                  (Got ringworm-like sores from it before)
                  (Someone else got what looked like 'eye herpes')
                  (My husband got an ear infection. We were all just sitting there!)
                  SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                  TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                  Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                  CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                  MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                  PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                  Comment

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