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  • #1

    Back in the USA

    Well, after 15 months in the UK, not getting anywhere with the health system, I'm back in Berkeley, CA, to see if I can get things moving here.

    I've already seen a urologist who has set me up with an appointment for a distension and cystoscopy next Tuesday. I'm nervous - I know distensions help some folks and really hurt others, but he says it needs to be done to really see what is going on in my bladder.

    I'm stressed - staying with friends on spare couches and empty bedrooms and my fixed disability income means I can't afford the minimum rentals for a room. I'm basically homeless, but just couldn't take London and the lousy health care any more.

    I''l let you all know what happens after the general anasthetic and tests on Thursday. This is a bit garbled 'cos I'm nervous. Do reply if you feel inclined.

    dines
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  • #2
    Hi
    I had a cysto-hydro in July. I was put under for it.. Woke up and was ready to eat and get going!! Ihad to have driver to bring me home. I was dignosed at that time and glad to know what I had atleast.no more guessing!!! I was one that it did not help at all..
    I have been on Elmiron since Sept. and doing better. Still have flares and still learning how to deal with them..This last one I was prescribed Pyridium and Ditropan...Hope you get the med insurance sorted..
    All the best!
    ~~Pam~~
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)

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    • #3
      Hope you find some help dines. There are some good, caring uros out there you just have to find one right? Anyway, I hope your situation improves. I can remember worrying about being homeless after losing job, etc. and I am better now so there is hope.

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      • #4
        good to read your replies. thanks.

        medication is the other big one, isn't it? i was put on amitryp in the UK, which worked so well, but i couldn't take the side effects. before i left i was put on neurontin. the urologist i saw last week has put me on pyridium plus, so i'm now on 2400mg of neurontin and 600mg of pyridium. don't know if 2400mg is really high dose. in the UK they'd never let me take that much, but over here, the urologist didn't flinch. i had to raise the neurontin - it was not doing any good at any lower. do worry about drug interactions and pyridium plus includes a barbiturate, but i don't know.

        being homeless and ill is awful. i just pray things fall into place.

        thanks for the feedback. any feedback re meds welcome too.

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