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  • When your urologist won't write a letter?

    I am coming up for my review next year, and my urologist explained to me that she doesn't write letters to SS. She says this is company policy. She only gives them my file. My PCP is not an option either. Because she feels that doesn't treat me for IC, neither will she.

    Has anyone run into this situation with thier uro's not wanting to write a letter for continuation of benefits or even for a first time approval?

    It's a shame that any of us even have to worry with such a painful condition.

  • #2
    Re: When your urologist won't write a letter?

    If she sends the file, that should be enough if you've already been approved and are still being treated by the same doctors.

    Donna
    Stay safe


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    • #3
      Re: When your urologist won't write a letter?

      I like taking a little control of what's in my doctor's files by bringing in one-page type-written 'updates' on how I'm doing. I put the medications I need prescribed that day, the medications I'm on, and then various other concerns from some bad flares, food problems, etc. I had SSDI for 3 years and they have reversed it. I'm going to my urologist next week so I'll make this update a little more detailed.
      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

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      • #4
        Re: When your urologist won't write a letter?

        Taramc,

        I agree with you. And your 100% right on SS reversing it. The same thing happened to me. If SS can find any part or even a sentence that indicates to them that your improved, even if your not but for example, just getting by, they will assume that means "improved" and will drop you faster than a speeding bullet. How they even expect you to work, let alone drive, with all those medications your on? This is one of the reasons I have made the decision to get my bladder removed in Feb. I only have 1 year left before my review comes, and I feel a sense of urgency to get myself fixed and help support my family. Because nothing I am doing is working. 26 years and now I am wearing foley's. When I am out, the foley's cause so much discomfort that I take them out in public places. There is no way I can work with these foley's.

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        • #5
          Re: When your urologist won't write a letter?

          I can't believe your urologist won't write a letter if you're dealing with all those symptoms!! Mine wrote one 4 years ago when I first applied for SSDI. And she wrote one to my employer (I work 15 hours in a simple call center) when they started a waiting list for bathroom breaks. I see her next week and I don't know what she can do about the SSDI reversal, but she'd probably write something if I asked. Mainly I'm just putting together the notes I'll bring in. At least we know those things get scanned in these days. Seems all my doctors are doing it that way, now.

          I have to say I'm really glad to not be alone in this 'reversal' situation. But how terrible for you to be in such bad shape and they still reversed you. In my appeal, I marked for SS to STOP sending me benefits, since there is a threat in there about me having to pay them all back if they don't rule in my favor. Then they paid me - so I had to go back in and ask what's going on. They wanted their money back right then and there!

          Again let this be a warning to others as our government is going through some serious funding problems. That said, we're lucky to have a government. Right?
          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


          • #6
            Re: When your urologist won't write a letter?

            Thanks Taramc,
            That's why I am getting my bladder removed in Feb. Because despite seeing doctors, I cannot get any help--not even from my own urologist (as far as the letter goes), nor any pain clinics. The last pain clinic I went to thought I was just seeking drugs, and then they referred me to a rehab center.

            But the pain clinics here aren't the only one's I've had problems with. I've also had problems with my PCP when I tried to explain my IC to her, and she rolled her eyes. Long story short, she didn't believe me and she told me that, "I could not possibly have IC". I complained to her manager that she rolled her eyes and the next thing I knew, I was dropped as a patient, not only from her, but from half the doctors in this town as well!! All because I spoke to her manager? After that event, I finally found another PCP, but she was very rude to me also, arrogant and belittled me, telling me that, "no pill is going to solve my problems". She continued to tell me that, "If I just went to bed on time, I wouldn't have all these problems".

            Ever since we moved to this state, I have had nothing but problems with doctors here and I'm now to the point I'm fed up with it. I've decided that I'm now going to start wearing a tape recorder device in my shirt, so that the whole world can hear for themselves how I am being treated. I must look like a dummy to these doctors? Maybe these doctors will act a little nicer if they knew they were being monitored secretly? I'm sure the media would be interested in my evidence. Maybe that is the wake up call that some of these doctors need since they choose to be arrogant and condescending to their patients!!

            I now am seeking a pain specialist who is 90 minutes away to get out of this town and find some help before my bladder removal gets here and in the event I should face phantom pain. But I don't know if he will treat me any better. I could drive 3 hours for nothing. We'll see. And so it goes...

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