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  • First Appt today!

    So today is my first appt since the call from the nurse that officially diagnosed me. I "believe" that I will ONLY see the nurse seeing as I was told the doctor had no openings until AUGUST. The receptionist knew I had no idea what was going on when she scheduled me, but said maybe the nurse could answer my questions...we shall see. I want to make sure I cover all my bases...any advice??? I have the basic questions about pain management seeing as it hasn't let up since Tuesday and sleeping seeing as there is none, but I am leaving Saturday for 5 WEEKS so I don't want to get away from home and realize being a newbie I forgot to get something or ask something really important. THANK YOU ALL!!! I am getting little to no support here at home and I really appreciate all of you more than you know!

  • #2
    One thing I learned after seeing a few doctors in the beginning was to ask up front what treatments they offer for possible PBS/IC and what your options are if diagnosed with this condition. I wasted a lot of time seeing drs. who were limited in their treatments. One nurse flat out told me the dr. only used Elmiron and Prosed or Urelle for his IC patients and never prescribed Atarax or used instills, and had no idea why vaginal valium would even be considered for use. Goodbye to that one.

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    • #3
      I figured I would let you know that I did read your thread by now. I must state the nurse must be a good one because I have had some ask about my medications that had no idea what Elmiron was used for. Oh! I've even heard it pronounced incorrectly more than once.(Emiron or whatever) I do hope and pray that the nurse will help you out good enough. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I am also figuring you have been having sleep deprivation as well. I use to have much of that, but I usually get proper number hours of sleep by now. I just don't feel like it too often.(and waiting to hear about having the sleep study done)(though I am not expecting you need to have that now) Many IC'ers do take meds that can help with sleep deprivation. Of course, you may still have to get up. I did get up twice during my last sleep, but I got back to sleep easily enough. Many would tell you to check on the "ICdiet"as well. I happen to be a male, but I was still diagnosed with IC back in 1997.(while it was still being called a womans disease) OK. I don't travel much anymore.(though I have been halfway around the world by now) I deal with degenerative disc disease as well. Most of us can find bathrooms as good as police dogs can find drugs. Yep! We do realize many people don't understand. That can include our own family members. What a bummer! Maybe you could try to educate some family members about IC. (or show the message boards here to some) OK. I don't know what time your appointment will be. I don't know if you will travel by car or plane, but some do fly with IC. Oh, yeah! Some travel by automobile and have all the turnoffs, exits with places to urinate, in their heads. Yep! Oh, well!
      Last edited by statesboro; 06-27-2011, 05:24 PM.

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      • #4
        Well...I actually got to see the doctor today so I was pretty surprised. I did not have an instill which is what I expected though...I will get that on Wed. He put me on Ultram and elavil. I am a little leery of that. He said the Ultram was short term because he doesn't like to give pain meds. He is only giving them to me because I am going out of town. I did some reading and both Ultram and Elavil have a seizure risk...not to mention I am on Wellbutrin which has that risk too. I understand not being able to give pain meds by law or something, but he doesn't like to give them because they mask the symptoms. ???? UH, WHAT??? We know what the problem is and yes, we would like it masked so we can get some relief! I will give it a whirl I suppose and see how I do on instills. I am just so TIRED!!! I feel like a zombie and the spasms are making me crazy. I asked for Valium suppositories and he said he had never heard of them. I am going to push again on Wed.

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        • #5
          Good luck! I know the zombiefeeling. Hope wednesday will bring answers.
          Not diagnosed yet

          More than a decade of 'bladder issues'
          Main symptoms: burning pain in urethra, urgency, frequency
          Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
          Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
          Starting physical therapy soon

          Getting married 7/7/2012

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          • #6
            Hi Stacie - I'm so sorry that you are having such a tough time of it at the moment. Don't be too dismissive of the Ultram. You may find that it will at least enable you to get some sleep. Once IC makes you sleep deprived, everything seems so much worse. I know I sound like a commercial for AZO Standard (see my other posts ), but if you are leaving town for a while, pick some up to take with you. I have found that when all else fails, if I take it before I go to sleep, it will take the edge off my IC symptoms long enough for me to pass out. When the flare is really bad it doesn't last too long, but I'm sure you'll agree, a couple of hours sleep is better than nothing! Good luck with everything

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