Hypomagnesiumia, I am a ticking time bomb!! - page 3

I am looking for advise to keep my magnesium pills down. I have had hypomagnesiumia for 2 years now and have been to see a nephrologist who said my kidneys are excreeding the mag too fast causeing me... Read More

  1. by   weetziebat
    know i'm not the only one, but boy does this frustrate me. you work, try to pay your bills, get sick and need help and they basically turn their backs on you. aaaarrrghh!!!!!!!!!

    but if you got pregnant every three years or so, then they'd happily put you on ohp and you'd have carte blanche to visit however many docs you wanted to. who makes these rules???

    so, if you were to call a suicide prevention hotline and tell them you are at the end of your rope, due to all your medical problems, what would they do? would you get physical assistance if you say you've got mental issues? hate to suggest playing games with the system, but the system is certainly ignoring you, aren't they?

    pretty pathetic when you need medical care and have no where to turn. i'm so frustrated i could spit nails! - can't even imagine how you must be feeling.
  2. by   perfectbluebuildings
    Curleysue, I am still a student and have no medical advice to offer you- but I just wanted to tell you I care and I really, really feel for you. Come vent to us any time and let it all out, we will listen.
    I hope and pray things get much better for you soon!
  3. by   sharann
    This is what steams me. There are people out there like you who are trying to better themselves and work and have insurance but can't get help, while others go on welfare and medical and medicaid and get to go to er for free. I was not recommending calcium, I was just wondering because I remembered that having a high intake of CA can lower your magnesium levels.
  4. by   Sis123
    Hi CurlySue,
    I used to read these websites in hopes that they would help my migraines. Evidently low blood magnesium levels can cause very bad migraines, and many migraine patients are helped tremendously by IV Mag Sulfate. Bartter's is similar in that the blood levels of Mg and K are both low. You may have already checked this out, but take a look again at these and you might see something you haven't seen before.

    Also, Phil (?) suggested a drink made from Club Soda and Milk of Magnesia. Evidently the carbonation ionizes the Magnesium so that it can be absorbed pronto. I used to drink it all the time and I think it helped my migraines. I'd try this for sure in your case, and it could help you because of your intolerance to mag supplements.

    Classic Bartter's disease
    http://www.barttersite.com/classic_bartter.htm

    Hypomagnesemia
    http://www.barttersite.com/hypomagnesemia.htm

    Magnesium site:
    http://www.barttersite.com/magnesium.htm

    Recipe for Club Soda/ Milk of Mg drink
    I looked and looked for this recipe, and can't find it. Basically it's a liter of Club soda, and Milk of magnesia 1 ounce, shake and let sit for some time (an hour or two?) then add another ounce of Milk of magnesia and shake and let sit (This will cause the magnesium to go into solution). Pour some of this mixture into a small glass, then fill the rest of the way with water. Tastes kind of wierd, like mineral water. Sip this throughout the day. That's as close as I can get to the original recipe. Perhaps Phil can chime in with the recipe that he has.

    Wish I could do more to help you!
  5. by   General E. Speaking, RN
    Your situation puts my petty complaints into perspective, I hope you find some answers from the posts...I don't have any advice, but I wanted to let you know that I am sorry you are so ill and are having to deal with the idiotic insurance co. Please don't give up. Vent here anytime- you'll always find a caring ear. I will be remembering you in my prayers. Take care. :angel2:
  6. by   webblarsk
    I think about you often and hope things will get better for you. I admire your courage! Please keep us posted!
  7. by   NRSKarenRN
    thanks sis for your links. curiosity along with hot flashes made me chedk out links as unaware of condition. found this:

    gitelman's syndrome: sounds exactly what your describing

    http://www.barttersite.com/gitelman1.htm

    the rn + doctor behind this website is at thomas jeff in philly---willing to contact them for more clinical info to send to your pcp.


    west coast: oregon health & science university

    the division of nephrology and hypertension has a large and diverse research program that includes clinical and basic science investigations. including

    bartter's and gitelman's syndromes and hereditary salt wasting

    http://www.ohsu.edu/nephrology/research/





    [color=#003300]

    [color=#003300]

    [color=#003300]clinical article by dr that i was easily able to understand, discusses gittleman's, fee to read whole article.
    [color=#003300](doc is with univ of penn, another closeby facility to me to pick brains.)
    [color=#003300]
    [color=#003300]causes of hypomagnesemia
    http://patients.uptodate.com/topic.asp?file=minmetab/8931#1


    dx and treatment:
    http://patients.uptodate.com/topic.asp?file=minmetab/9328

    ------------------
    #1. priority: read up on this condition. printout info to take to pcp appoint and demand appointment at facility like above: large teaching hospital with medical school.

    #2. call insurance company and request "case managment" services. that is an rn insurance reviewer will be dedicated to reviewing your treament needs and authorizing care when indicated. a goog one will push that you are appropriately diagnosed so to minimize insurance company costs and provide healthcare you need.

    #3. ask for insruance company medical director review of your case and needs for mg+ infusions. all those er visits where you are being treated due to clinical findings and critical lab values are more expensive than scheduled treatment.

    #4. appeal, appeal if decision not in your favor.
    50% persons never appeal so saves companies $$$.

    i doggedly persue auths and denials from intake....can you tell that's what i did most of today and was able to help get about $4,000 worth of homecare services paid for today.
  8. by   curleysue
    I just had to share... I just received news today that the appeal to Blue Cross for terminating my insurance due to medical necessity was overturned today! I get my insurance back! I am so excited. This means I don't have to pay anything out of pocket! Oh my gosh. If you don't know what I was battleing with Blue Cross I will tell you.
    About 2 months ago they told me that they were terminating my coverage because they said I was seeking un-need medical care, like the frequent infusions. Well we fought this so hard. My sis's best friend is a lawyer and so is her father for a major law firm. She helped us with all of this and sent a nasty letter to blue cross. As well as all my doctors including the nephrologist, cardiologist, rhematologist and internist saying that all this medical care I was recieving was for a REAL condition that I am fighting so it was all so unfair but I seriously thought I lost that insurance, which is a COBRA plan through my parents for another year. So, I ended up getting free insurance through my work but like I said it was just a "better than nothing plan" that made me pay like 30% of all bills and 50% of my meds! And to make matters worse, there was no out of pocket maximum! So, I would be paying so much money and there wouldn't be a stop loss.

    So, forgive me but I am so excited. That ER visit I just had, I won't have to pay all that money for it! OH, I am so relieved.

    Now back to my mag. Thanks for the previous post. I am contacting Oregon Health Sciences University Renal department to see if they can help me. At least maybe I should go see their nephrologist and see if they have any suggestions. So thanks everyone. I am still fighting this!
    Curleysue
  9. by   NoDayButToday
    Hey Darlin'. Wow, what a story, my heart goes out to you. I just wanted to tell you that my mom has MS and she applied for disability and got rejected but appealed it and she won! So just think about this as an option, and never give up! Also I'm sure you already know this but here are some foods for you that are rich in Magnesium:
    Soybeans, whole grains, shellfish, salmon, liver, almonds, cashews, molasses, bananas, potatoes, milk, green veggies, and honey.
    Try these out and see if they help!
    Best of Luck, We're All Here for you if you need us!
    Keeping you in my thoughts and prayers ~ Brad

    STAY STRONG!
  10. by   webblarsk
    What great news. I am so happy for you! Good Luck!
  11. by   Sis123
    Hi Curlysue.....

    I havent't read thiss thread in a long time and was wondering how you were doing? Any better? Let us know.....

    hugs

    Sis
  12. by   wavanslyke
    Oh. My. Lord.

    Curleysue, you are a complete and total godsend. My mother is exactly the same way. Almost to the letter, your two cases are alike. Same time frame... A bit over two years. Same exact problems. Except her doc took her off the oral mag because she, too, was getting really sick. She goes into the Day Surgery at the local hospital every wednesday for an infusion.

    After two years of searching, this is the first I've ever seen or heard of a case like my mother's. My mother is marginally older than you, but that's really the only difference between the two of you...

    Though i didn't really find anything here to help my mom (we've tried all the suggestions already, hate to tell you...), I am just overjoyed to know (I'm sorry if this sounds horrid, and I don't mean I'm happy you're sick, in fact I'm very sorry because I know how hard it is) that we aren't alone in this, you know?? Maybe if it's not JUST my mom, then some doctor or other out there will know what to do, and something can be done...

    You're in my thoughts curley sue. Message me if you ever need anything. Even if you just want to talk.
  13. by   jeandawson
    That's very disturbing.
    I am familiar with hypomagnesiumia. Unfortunately, my one-week old baby has low mag levels, is recieving iv mag infusions, has bouts of VTACH and I'm terrified, to say the least. I'm surprised to hear of the port infusions, similar to dialysis, yeah? This low level was also found in me, and would explain quite a bit (fibromyalgia, migranes)

    I do hope your situation becomes manageable, however I know that things are difficult. I feel for you and your dilemma. I pray for you and your sanity. I know it's not easy, I'm not even there yet, but see it's not going to be an easy road.

    Thank you so much for sharing, I've actually learned alot from your post. Vital information on a rare condition... is appreciated. It's not easy to find. Thank you.

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