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Anyone have much experience with difficult doctors?

Discussion in 'Physical & Sexual Health' started by Udnzebra77033, Sep 15, 2021.

  1. Udnzebra77033

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    I am having a problem with not just one doctor but what seems like every doctor I go to. Does anyone have experience with this type of issue where no one wants to help?
     
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  2. Really

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    If you give a few of the details or the problem area in general, we might be able to offer suggestions on how to deal with this and/or advocate for yourself.
     
  3. Udnzebra77033

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    I have a rare condition that has no FDA approved treatments yet my doctors refuse to consider any out of the box ideas and demand I only go for FDA approced treatments for my symptoms even though all they are wanting to give me keeps landing me in the hospital.
     
  4. QuietPeace

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    I am a woman who was assigned male at birth. I have had doctors refuse to treat me at all because of that, some even refusing me medication for regular medical conditions like my asthma.

    I also have several conditions where doctors did not want to address it. For some conditions it just took continually pursuing doctors to find one that could help me. My migraines and fibromyalgia took until my 30s to find help from doctors and even with those I found better treatments on my own after finding out which conditions I had.

    I also have a rare condition which was only written up in medical journals in 2001 (PGAD/GD). I only found out what it was in a random book in 2017. I have never found a doctor who would even address it (I did find a doctor who would prescribe a medication for my Interstitial Cystitis [IC is one known factor for PGAD/GD] but in discussing that medication with other patients I found that particular medication damages the retina and often leads to blindness which the company refuses to warn about, they only warn about hair loss as a side effect).

    With most of my conditions what I have found was that pursuing ways to address the conditions by connecting with other people who had the same condition was more productive than seeing doctors was, it was also far less expensive.
     
  5. Really

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    Ugh.ok. That’s no good.

    I’m not particularly familiar with the American healthcare system so I’m just spit-balling here. Some advice I’ve noticed on other forums being given when people who are having issues with healthcare providers, is to first, ask why they won’t do ABC and then request that it be documented in your records that ABC was refused for whatever reason they’ve said. I believe the thinking is that they have to stand behind they’re medical opinions and this can sometimes prompt them into action. I suppose this means you need to have an idea of what avenues of investigation you’d like explored so some homework/research is required on your part. Unfortunate, but I’m guessing you’ve already done some of that. :[

    You might want to check out sites like pubmed or the mayo clinic to see if they have references to scientific studies that might be more likely to be taken seriously than just a “whiny patient”. (I’m not saying you are one but that might be how the doctors are predisposed to treat you.) Even if you don’t understand the scientific jargon, you can take the studies in and ask to have them explained and how the findings might apply to you.

    And finally, if you’ve found any forums for people who have the same condition, maybe they’ve collected a list of MDs around the country that others have had good luck with.
    I guess there’s always “get a new doctor” but I realize it’s not always as easy as that.

    I hope this gives you a few ideas. :}
     
  6. Udnzebra77033

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    If you have a rare condition that is more relevant to my reason for being here. With rare conditions doctors are encouraged to think outside the box, but mine keep trying to shove me back to treatment ideas for mainstream problems that have actually made my situation worse. I have tried explaining several options that came up either by accident or after thorough research that indicated better results than the FDA approved options for common problems that they demand I use.

    The messed up part of my situation is that with my situation, I am actually a straight male. AMAB who has a very difficult medical issue, but based on thorough research it appears taking a low dose of estrogen may be my next option to add to my line of treatment to help keep me out of the emergency room and I am clueless about how to get my doctors to consider either this option or any alternatives along the line of reasoning of why I came to the conclusion of this option for treating a medical disorder severe enough to require emergency room care
     
  7. Mihael

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    It's tough to talk about it without any details.

    All I can say is that in my experience, you might need to change your doctor even a couple if times before you find the right one, with whom you are on the same page.

    Aha. Estrogens. Generally speaking nobody gives estrogens to cis females lightly either, because they can cause strokes. Even for medical conditions, progestogens joined with antiandrogens are preferred.
     
  8. Udnzebra77033

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    Thanks for the idea to look into about those other hormones, but in my case I mentioned estrogen specifically because I am not only evaluating gender hormones, but anything to cause edema. I have tried discussing even using other things way left field like taking ibuprofen for the issue but my doctors seem to only want to discuss ibuprofen if I actually fall and actually develop pain, not how it may be keeping me out of the emergency room for a severe seizure disorder. The additional parameter to work around that gets a little weird about my condition is where I seem to be developing an added problem around what the drug is designed to treat, for example with the ibuprofen, when I started taking it I had a flare up of some pain even though I did nothing to cause an injury. My thinking around the low dose estrogen as a viable option, not necessarily enough to make a full transition to the opposite gender, but enough to simply control my problem with that edema side effect is as for the other mysterious occurrence of developing problems around the issue the drug is more designed to treat like with the pain from the ibuprofen or other similar problems I have noticed with other things, explain how I am supposed to develop some blizzard problem with a reproductive system I do not even have.
     
  9. Mihael

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    As far as I know, edema is worsened by estrogens, as they cause fluid retention. Also, with blood circulation problems, both estrogen and progesterone aren't advised, because they both cause clotting and might be deadly to people with such health problems. I don't know much about edema, but I know a bit about sex hormones and female hormones do cause clotting and do cause people to end up in intensive therapy (I know a couple who did), especially if they have preexisting blood circulation issues.

    That being said, I think that if the treatment you have tried so far isn't working for you or has unusal side effects that are hard to deal with, you should look for a different doctor, and if you have tried a couple of treatments before, you should look for someone who specialises in your illness or all your conditions at the same time and has insight (most doctors just follow guidelines and don't know the chemistry). A better doctor might be more expensive, but insightful treatment options can make a world of a difference and you might finally actually get cured (provided you take the medicines as prescribed). So it's worth the money.
     
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  10. Udnzebra77033

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    I think you missed my point on edema, you took it as a bad thing, for my condition fluid retention is a good thing. That is why I also mentioned ibuprofen. Ibuprofen is one that already has made some improvement on my condition because I decided to buy a bottle over the counter specifically because edema was a side effect. The idea was "dumb" enough to actually work with my problem, but my doctors have been trying to force me back into FDA approved treatments even though there appears to be no FDA approved option for my condition.

    Is the reason I have been trying to wade through ibuprofen, estrogen, daily doses of antibiotics and other options as a way to improvise to fix my condition.
     
  11. QuietPeace

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    @UDNZebra Things might be a lot easier if you would just state what the condition is
     
  12. Udnzebra77033

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    Seizures due to low sodium that show improvement due to substances that cause fluid retention
     
  13. Mihael

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    Oh, I see. I have to admit though, that the grammar of your post and use of the name of an illness: "edema" imply that this is the issue that you're dealing with.

    Then again, I can only guess what the reason is and advice you to look for a doctor who specialises in issues like your condition and who has more insight or to second what QuietPeace said about reaching out to comminties of people who share your condition. Another thing that comes to my mind is that you can research herbs - they're less likely to have harmful and strong side effects like antibiotics or hormones do.
     
    #13 Mihael, Sep 16, 2021
    Last edited: Sep 16, 2021
  14. Mihael

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    I don't want to play doctor. It seems unusual, because there is so much salt in food nowadays. It reminds me of a hormonal condition related to the adrenals (even a few, I think) that I read about, but I obviously might be wrong and there might be 100 conditions that cause such symptoms - maybe going to an endocrinologist instead of a GP would be a better idea than self medicating with strong medicines.
     
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  15. QuietPeace

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    Maybe I am thinking of this too simplistically or I do not actually understand what you are saying. It seems to me that if you have seizures from a lower sodium level that just going on an average american diet would solve that since it is so high in sodium that you would never have low sodium levels and thus the seizures caused by low sodium levels would not happen.

    Earlier on from a few other things that were said I thought to myself that maybe seeing an endocrinologist might help. I agree here that maybe one would be a good idea.
     
  16. Udnzebra77033

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    Went to an endo and explained a history of adrenal cancer when I was a kid actually and was told there is usually no problems after that type of cancer I should have nothing to worry about even though I still wound up in the hospital for sodium being too low even while attempting to pull off a cornholio routine that involved replacing coffee and nodoze with salt tablets and sports drinks.
     
  17. Udnzebra77033

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    Believe it or not, average American diet isn't good enough. I can actually have a Buffett on all kinds of high sodium foods like spam, caviar, anchovies, gatorade, and others and still bottom out without taking something to help
     
  18. Mihael

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    One?
     
  19. Udnzebra77033

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    One in this state since I moved here, three others in the last state. After so long of saying I need another option in treatment and no One gives me one, what other choice do I have but to self medicate?