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Thread: peepee problems

  1. #21
    Moderator jody's Avatar
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    I called My Drs office and asked to see anyone. that was Tuesday. My GP found out I was in a waiting room and traded patients. she looked pretty annoyed.
    she said my heart tests were unremarkable. I lifted up my shirt and showed her my even larger belly hanging off to one side. she shrugged and made a what the fuck expression.

    I told her about my peeing problem again, and that at night nothing reaches my bladder, I was just getting bigger and bigger. she said it was impossible for pee to make your belly distend. there was nowhere for pee to go if it didn't go in your bladder.
    she says that makes no sense.

    when I told her about my hands going red white and blue, she didn't bat an eye. oh, thats raynauds phenomenon, its no big deal. I was terrified to tell her it happened because it was crazy. I apologized for having to tell her another thing that made no sense. as I became teary I could tell it was happening so I just showed her my hands. she said I should take the colonapin she prescribed to "calm my anxiety down"

    she was exasperated with me. the only thing she couldn't say is normal is my swollen hands and feet, and the way my wrists are popping out of place as the fluid builds up. but to her my huge pregnant look is normal. she gave me lasix. 1/2 pill once a day in the morning. It did nothing, so took a whole one. I can't even describe the belly pain and side pain. It worked though, and I had to cath every hour and sometimes after 45 minutes for several hours. by the evening there was no pee at all but my feet and hands got to looking less blown up, but by morning my hands feet and belly were starting to inflate again. yesterday I took one lasix in the morning. its very painful when the fluid gets sucked out of your tissues. the feeling in my eyes is very strange. by late afternoon the lasix was no longer working and my feet and hands began to swell again. my eyes too. I took another lasix even though it is not prescribed to take more than one in a day. I was really scared to do that, but it didn't change much about not peeing at night. I was only able to pee 90ml at 2am, and 290 at 7am.

    My GP says its impossible to not to be able to pee at night but can pee in the day. Im only able to pee during the day with the lasix though.

    and the strangest thing of all is that after iv had a day of lasix, I feel like im starving. I feel hunger. an intense hunger. I havn't felt hunger for years. its been one of my constant complaints here at care cure, apart from the tachycardia that started in 2009. she says the tilt table test is the only absolutely positive test. that was 2010 and its a million times worse than it was then.

    they rescheduled my appointment with the same cardiologist that did the tests because the one they had scheduled me with cancelled. I see him in the 12th. all I can hope for is that he can see a difference in my appearance from that day he did the tests, to what I look like when Im not so blown up. its all I have. the fact that my jaw is getting strange, or that opeining my hands is an effort should matter but they won't see that ether im sure. I told her over a year ago that it was hard to swallow and things get stuck, but she says take more prolosec, its just acid reflux. they said my great grandmother had stomach cancer because she couldn't swallow and her belly was huge. my mom had swallowing difficulty for a couple years before she died. she was always thin too. really thin but when she died all they saw was a fat sleepy old lady. I hadn't seen her in a few years, I hardly recognized her. I recognize her now though. Last night, I did something I have never done. I googled a symptom. the raynauds.

    its not a mystery disease at all. Happy New year to me. its been studied in two tribes that see it in the women in their family. Choctaw indians in oklahoma, and Shoshone northern paiutes in Utah and Nevada. I am kawaiisu southern paiute.

    the tests are simple. the same dr that was sure I had MS is the only Dr in My area who knows this disease. he examined me last in 2012.

    There is no cure, and that an ordinary dr would miss it over and over is not so hard to accept. It wasn't their fault at all. they just didn't know what they were seeing.

    I do though. Its systemic scleroderma, and it is the way women die in my family.

    how do I tell my dr this though? what do I do now?

  2. #22
    Simply say that you think you might have scleroderma, as it runs in your family. You don't have to make excuses or offer elaborate explanations for wanting someone to rule it in or out, given your symptoms and family history.

    Regarding your feelings of intense hunger: that can be a sign of liver problems. I developed toxic hepatitis from an antibiotic (Erythromycin) many years ago, and my primary symptom was gnawing "hunger pangs" that were completely unaffected by eating. It took many months for my liver to return to normal.

    Liver issues could also be causing your abdominal fluid buildup. Kidneys, liver, gallbladder, pancreas, heart...all of these can be related in a chain of domino-like effects.

    I don't know what to say about your future course, since your doctor appears to have washed her hands of you. You need a multidisciplinary approach, where a team of doctors considers your situation. But that doesn't appear likely to happen, if you stick with your present doctor.
    MS with cervical and thoracic cord lesions

  3. #23
    Senior Member lynnifer's Avatar
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    That is frightening. Any way to get to a big city hospital ER? See someone totally new?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #24
    You need to go to the ER and now why are you waiting and dealing with your GP who obviously hasn't a clue what they are doing!
    T6 Incomplete due to a Spinal cord infarction July 2009

  5. #25
    Moderator jody's Avatar
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    I learned there is a certain kind of pots associated with it. this kind of pots lives on histamine and Adrenalin, and causes high blood pressure not low, is associated with raynauds disease, scleroderma kidney failure and the family cancer.

    the fact is, I probably don't have a lot of time left if this is the mystery illness.

    I recognize it like id recognize my own mother though.
    It is not race related, but some ethnicity's have a more deadly kind. the systemic kind is absolutely passed from mother to daughter in some families, but usually only certain North American indigenous groups, and some African american family groups.

    I got to compare my skin to my daughters. she is half my age. I had no idea how different my skin is to other peoples skin. you cannot lift it in a pinch test, and needles getting stuck in my skin has nothing at all to do with being dehydrated. it has to do with thickened skin that has too much collogen. the thing on my elbow is a kind of skin lesion associated with scleroderma, and not a pressure sore that won't heal. the constricted esophagus, is a key development of the disease, as is hypertensive kidney failure, mal absorption , genetic rickets microcidic anemia, fibroid growth, lung and heart scarring, edema, and a kind of small cell carcinoma that is very hard to detect early.

    My doctor would not know about the other kind of pots. its only been identified as an alternative type of pots for only a few years. I saw her on Tuesday, and she was able to take my blood pressure during an episode and it got higher not lower. I could tell she was confused. the raynaudes was fully visible, and my heart was hoppin and floppin. Im sure when she knows there is a different kind of pots she won't be so exasperated with me.






    there is no way my poor dr could have put this all together if she's never seen it. the only way I did is because iv seen it five times in my family, and the dead ones saw it generation after generation before me.

  6. #26
    Moderator jody's Avatar
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    Bonnet,
    I see a cardiologist on the 12. I will let him know about the special kind of pots and about my reasons for suspecting systemic sclerosis. all the tests I took would be ordered for this disease. I am going to ask to see the same dr who thought I had MS. he's a rheumatologist, there is also an orthopedic and a physiatrist, who all saw me when the pots was first diagnosed before it became constant.

    I am going to look for another GP. I feel our relationship is damaged, though I do not blame her for not knowing. you just can't know everything. I think though if she ever meets another lady like me, she will know something more than she did before we met, and maybe it will help that future lady with the mystery illness.

  7. #27
    Jody, I feel so bad for you and wish I could help. Your intuition about what's wong is as good as (and probably better than) any theory your doctor has, but without an official diagnosis you won't get a treatment protocol. If only you could go to Mayo in Rochester, or some other place that specializes in unraveling unusual medical presentations. Your doctor is clearly out of her depth. If you go to the ER, maybe someone will recognize your need. If magic wands existed, I'd be waving one over you 24/7.

    Edited to add: I just saw your most recent post. Hopefully one of those specialists will recognize the truth of your situation and be able to help you.
    MS with cervical and thoracic cord lesions

  8. #28
    Moderator jody's Avatar
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    the pots responds to antihisamines.

    nothing has affected this pots thing at all. nothing. I had to take two to get an effect, but the effect is drastic. the raynauds is still there, the kidney issue is still the same, but the tachycardia and feeling of faint is gone at the moment.

    how do you like that? a fuckin antihistamine? she tried a blood pressure med when doctors were trying to see if it was withdrawal from pain meds. clonadine, then took me off blood pressure meds when I started passing out in the shower. its still there but not enough to make standing impossible.

    when I went to the ER a few weeks ago, the Nurse got three iv's stuck in the right arm and hand. I tried to tell her you couldn't put iv's in that arm because the veins would collapse as soon as the fluids were started. she yelled at me and said I had fine veins, but ended up using my left arm, which is the arm with the less finicky veins, and the needles don't get stuck in the skin. The ER doctor accused me of going there because I was no longer on a large dose pain patch. I never asked for any pain meds at all.
    his attitude was condescending and reminiscent of the way I was treated when an ER dr tried to diagnose me with VD instead of a twisted ovary.

    when the blood pressure cuff was so painful I couldn't stand it, the ER doctor said its because I have some kind of pain med syndrome that cause pain to feel like its bigger than it is. the pain is in the bone. as soon as the cuff tightens I nearly faint from pain. its the same arm with dislocated shoulder and elbow I cant straiten, can't lift that arm ether but its the one arm you can get a needle in. and blood out of. going to the ER is bad. that last Iv nurse was sadistic. she sat there staring at those three stuck needles like I did it on purpose to annoy her. for two weeks the veins were hard and painful in that arm. it looked like a pencil under my skin and felt like it too.

    going to the ER is only for people with very obvious issues, like a bone sticking out or you need stitches. they don't care about not peeing right. to them my yellow skin looks brownish. my bluish lips look like someone with olive skin has darker lips. the raynauds, red white and blue hands is "no big deal".

    my deceased relatives got the blue finger tips when it was close to the end. just before the doctors decided it was cancer and not a fat belly they all had. the only difference is by the time they were my age, their hands were deformed and almost folded. my hands and feet are just starting to be affected, and my jaw and lips.

    there isn't any point in seeing any more doctors who won't understand.
    Last edited by jody; 01-04-2016 at 01:10 PM.

  9. #29
    I certainly understand your frustration and hope that some of the doctors you plan to see will be able to help.
    MS with cervical and thoracic cord lesions

  10. #30
    Wow! I hope you get the proper treatment and are on the road to better health.

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