Idiopathic Edema - page 2

Have any of you ever heard of this? For the past month my mother has experienced pain and swelling in her legs. This is unusual for her because she has no health problem, no weight problem, doesn't... Read More

  1. by   plato353
    have had the result of a d dimer test it will rule out dvt.you mention your mother is on all american diet(junk food)
    discontinue that source and progressively change it.less salt intake and watch that blood pressure
    another reason could be claudication worth checking the risk factors
    hope that helps
    plato 353
  2. by   HappyJaxRN
    Quote from PhoenixGirl
    Thanks for the suggestion. And this is another odd thing, because they've checked her bp multiple times in the last few weeks and it's not high, not even mildly. Even when she's swollen.

    You mentioned the heart but being able to pump the fluid back to the blood. How would they test for heart activity disfunction?

    Rebecca
    A stress test, EKG, and/or cardiac enzymes (labs).
  3. by   PhoenixGirl
    Quote from plato353
    have had the result of a d dimer test it will rule out dvt.you mention your mother is on all american diet(junk food)
    discontinue that source and progressively change it.less salt intake and watch that blood pressure
    another reason could be claudication worth checking the risk factors
    hope that helps
    plato 353
    No, no, I said she doesn't eat the all american junk food diet. She is full korean and eats mostly korean food. But I did tell her to lay off the more salty, pickled things, drink tons of water and she says she has. Was this good advice?

    She's going for more tests today, and a Pet scan. I wrote down all of the things you guys have suggested and am going to her next dr. appt with her.

    I appreciate all the thoughts and ideas SO much. Thanks for helping!
  4. by   talaxandra
    A PET (Positron Emission Tomography) scan "demonstrates the biological function of the body before anatomical changes take place, while the CT scan provides information about the body's anatomy such as size, shape and location." (http://www.petscaninfo.com/) While cancer is one of the cnditions PET scanning is used for, there are many others, including cardiac function and neurological disease (http://www.petscanonline.com/history...y_index_us.asp). In other words, this doesn't mean they think your mother has cancer. In any case, tests are often performed to rule out diseases, rather than necessarily to confirm a diagnosis.
  5. by   chieko
    i was diagnosed with idiopathic edema 11 years ago. dr.s can't figure out what's causing it. i have seen endocrinologists, nephrologists, gastroenterologists, cardiologists, and rheumatologists. i take lasix (a loop diuretic) and potassium in the early evening which prevents the puffiness in my face and hands that i have in the morning and later in my lower legs. sometimes i have pitting edema in my lower extremities, but usually not. i have gained as much as 15 lbs in one day from fluid. i've woken up with a face that was so puffy and distorted from fluid that i looked like i was suffering from a bad case of anaphylaxis. i am 54 and japanese and tend to eat a more asian type of diet. my daughter who is 25 has started developing the same symptoms as has one of my younger sisters. this is bizarre...i stopped consuming sodium for 2 days and gained 23 lbs in fluid! my doctor was amazed! she thought it was a rebound effect from the diuretic use but i was still taking the lasix. it took a lot of lasix over 2 days to remove all that fluid. i definitely had pitting edema...it was stage 4. i am not diabetic, trend on the low side as to blood pressure, have excellent cholesterol, and have a healthy-low body weight. i been gluten-free for about 6 weeks. one night i forgot to take my lasix and i got up in the morning thinking i would have a fat, puffy face but i didn't. i could get all my rings off my fingers which usually i can't do if i don't take lasix. i have been gluten-free for the past six weeks and i think it's helping. i have recently been able to cut my diuretic dosage in half and that appears to be working adequately. in japan they are finding more people developing gluten intolerance since they are consuming a more western diet that contains more wheat. i'm sure that can be applied to korea. that's ok, i won't miss bread. i'll just eat more rice.:d

    lasix has worked for me and it has allowed me time to research other options of treatment and cause. i am definitely not a posture child for the use of diuretics in the treatment of idiopathic edema but it has allowed me not to have to deal with the the uncomfortable swelling and the unsightly appearance of my face. i've been tested several times for celiac disease but the lab results are negative. that doesn't mean anything. therefore, i have gone gluten-free. imagine, eleven years of putting up with this.
    it's a good idea to have testing done so any other possible problem can be ruled out. also certain medications and herbal preparations can contribute to edema. restricting sodium should help. ace inhibitors are used, since that was your original question. captopril is one that is supposed to have a good success rate. do your research on that since a lot of dr.s just aren't up to speed on this.

    hope some of this helps!

    an article regarding idiopathic:
    from: http://www.medicinenet.com/edema/page6.htm :

    "the leg edema in these patients is exaggerated in the standing position, since edema tends to accumulate in those parts of the body that are close to the ground at the time.

    these patients often have edema around the eyes (periorbital edema) in the morning because the edema fluid accumulates during the night around their eyes as they lay sleeping flat."
  6. by   nurseprnRN
    in the past, i had some other symptoms including this and had a battery of labs; they told me they were all fine, including thyroid, but since some of the symptoms looked allergic they sent me to an immunologist. he took one look at me and said, "thyroid antibodies." i protested that my thyroid labs were fine, but he said, "they didn't check your antibodies, did they."

    long story short, i was making antibodies to my own thyroid for no known reason, they said it goes away by itself in 2-5 years (!!) (it did), and not to bother with an endocrinologist because they sent all these patients to him, the allergy/immunology guy.

    so now i am doing it again and notice it's definitely associated with elevated simple carb intake. when i go back to a more atkins-ish diet, my ankles and tibias reappear out of the mist, i pee all night, and i drop several kilos in 2-3 days. if i gorge on carbs, i can retain fluid so fast i can see my cheeks in my field of vision . now my pcp knows to check my thyroid antibodies...and they are negative. so was my aic, chemistries including liver and kidney, exercise stress test and cardiac echo. no chf (thank you!). go figure.

    keep bugging the docs until they come up c something.
  7. by   chieko
    [FONT=Arial Narrow]Even when I was eating no carbs, I was still retaining fluid. I've had thyroid scans...negative but my TSH ranges from normal to high (hypothyroidism). I keep at it and I'm not afraid to tell a doctor what tests I want run, that I don't like his suggestions or dx, etc. I'm nice about it though and I do good medical research to back it up. Actually, most of the Dr.s I have now listen to what I have to say and respect me for it. Some ask me "What would you like for me to do?" Believe me, I won't give up. My liver enzymes are fine, kidney function is good, AiC normal. But now I have new issues to deal with. I have stress fracture in my hip that may require surgery plus AVN in the other hip. I do have osteoporosis, most likely inherited from my mother. My sister has it, too. Edema can be caused by gluten intolerance. I'm really working that one. Also malabsorption which can be brought on by gluten insensitivity and other dietary factors.
    [FONT=Arial Narrow]
    [FONT=Arial Narrow]I guess we'll just have to keep plugging away!
  8. by   MomRN0913
    I've had it too. I showed it to the nicest podiatrist ever when I was working. He had me come in, did xrays, and all it showed was fluid build up. Of course, i work 12 hours on my feel, but it was pretty bad. Yeah, and I am 31. He did do all sorts of lab work for me to rule everything out and everything was normal.

    I was say run the gammut on tests. But in the end, he told me to wear TED's. I did, well kind of, I wasn't so compliant and it did help me a little, but they were just uncomfortable to me.

    Anyways, I hope everything is OK, she sounds like she takes care of herself very well.
  9. by   xtxrn
    With elevated blood sugar, I'd expect more urinary output, and decreased edema-- curious why the doc thinks that could be a problem. Sitting can also cause edema, especially w/more sedentary desk jobs....
  10. by   chieko
    I think you should see more than a podiatrist.Edema can be caused by a lot of things. If you have a primary care dcotor, please take up your issues so you can get an appropriate referral for edema. Do you have metabolic syndrome? I don't but that may be something I'm sure you've had evaluated. Everyone is different but with that understanding, dx could be so improved.
  11. by   xtxrn
    Quote from chieko
    I think you should see more than a podiatrist.Edema can be caused by a lot of things. If you have a primary care dcotor, please take up your issues so you can get an appropriate referral for edema. Do you have metabolic syndrome? I don't but that may be something I'm sure you've had evaluated. Everyone is different but with that understanding, dx could be so improved.
    Check out the first post, and all of those in tan
  12. by   leslie :-D
    all about idiopathic edema.

    www.medicinenet.com/edema/page6.htm

    leslie
  13. by   xtxrn
    I'm sorry... I just keep seeing this when i'm looking through the thread titles......

    Did anybody else first see "idiopathic ENEMA" ????? Gotta up the strength of the reading glasses

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