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Thread: For real this time - how do I get actual help?

  1. #1
    Bradley is offline Senior Member
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    Default For real this time - how do I get actual help?

    I'm so sick of doctors and physical therapists. They have done nothing for me but rob me of time and money. When they can't help they either blame me or shove me out the door with no guidance as to what to do next. How do I find a medical person who will actually help? I've been a this for literally 9 years and I am much worse off. I've spent thousands of dollars and thousands of hours and to say it's been an absolute waste of time is a colossal understatement.

    How do I actually find someone who can help? I get NOTHING from these people. Every time I go to a new physical therapist I tell them what I've done before and that it didn't help. Guess what they have me do? The same things. Do they even listen?

    I drove 3 hours each way to see a doctor at the Hospital for Special Surgery and he diagnosed me with femoral anteversion. It's only the 2nd time a doctor actually acknowledged I have an actual misalignment, and the first time one actually put a medical name to it. And it only took 17 doctors. Literally 17, or more, as I may have forgotten one. 17 doctors and 9 years to get an accurate(possibly) diagnosis. If only I made audio recordings of all my previous visit's I might have a malpractice case.

    He had me see a neurologist to get an evaluation even though I had two EMG's several years apart that showed nothing and he was nearly certain I didn't have any degenerative issue there. I pushed back, but he insisted we waste several weeks going down this path. So now it's 7 weeks later and I'm waiting to hear back from him. He's had my report from the neurologist for a week and I was told by his office he reads reports the day or day after he gets them. So???

    Meanwhile my legs keep getting worse. I have no idea what to do, other than not buy a 2 story house, sell my ski equipment, give up on sports, hiking, learning to surf, and pretty much everything else fun outside.

    Seriously, how do I actually get someone to take this seriously? There has to be someone out there who can help.

    It seems like no one is even trying. I've never seen the slightest shred of urgency from any medical professional to actually get to the bottom of this and find a solution. NEVER.. Not once. Not a single one has seemed remotely bothered by letting this drag out for months and years.

    I feel like I've been neglected and abused by doctors and physical therapists.

  2. #2
    ad5ly is offline Senior Member
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    I like to think that the majority of doctors and health professionals are sincere in treating patients in their care. Its extraordinary that your luck is so bad that every doctor you see turns out to be a greedy uncaring A-HOLE. Do you know of other people with the same problem you have? If so, how did they resolve it? Who did they go to for treatment? It maybe that what you have is extremely rare and few if any docs know of it and as a result you are misdiagnosed. Maybe they just don't know. But if they know they don't know, well they should be upfront about it and tell you. I will just say that if you cannot resolve this, that you can make peace with it and be happy with other parts of your life. Wounded Warriors from our recent wars are one example of finding worth and relative happiness despite missing arms and legs, brain trauma, and pschological trauma. Good luck and be positive...Dennis

  3. #3
    Bradley is offline Senior Member
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    Quote Originally Posted by ad5ly View Post
    greedy uncaring A-HOLE.
    Whoa. Didn't mean to suggest this. Just that being robbed of time and money is the end result. They care, they just don't care enough to go any further than say "I don't know what the problem is" or "I don't know what to do about it." I mean, c'mon. I know they can do better than that. I don't get why they don't. My problem is rare, whatever it is. I can't even find any physical therapy exercises aimed at minimizing the harm of anteversion, though I literally have no confidence that that diagnosis is accurate, except in correctly identifying that there is a structural alignment issue.

    Doctors give me nothing but dead ends. I've basically had to beg for help. I've had to beg for them to consider that my problem is something they have not yet identified, and I've been pestering them this way for probably 5+ years to consider that there is something wrong that they haven't identified yet. Only in the past 9 months has this born any positive result, all but proving that I was right and they were wrong to ignore me. Usually the doctor just tells me there's no alignment issue. PT's were way worse about it though.

    I just don't get how it can be so hard. I'm fairly highly functional. So I bet if I was paid attention to years ago I could have reversed the problem. It may be too late now and it's the fault of doctors and PT's who refused to listen. I can still do just about anything, but literally everything feels dangerous. It feels like any second my legs could collapse and my knees just rip themselves apart on the inside. I'm pretty sure there is a minorly invasive way to fix this but I can't get anyone to actually think about the ACTUAL problem. It's like they just think, oh, I'm a doctor, I know everything there is to know about this problem, no reason to listen to the ideas of a mere patient.

  4. #4
    GeoffreyLevens is offline Senior Member
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    I like to think that the majority of doctors and health professionals are sincere in treating patients in their care. Its extraordinary that your luck is so bad...
    I think what you are having w/ Dr.s is more common than most like to think. In my experience it tends to happen when your particular issue is not a standard textbook type deal or is very rare. Talk to people w/ chronic fatigue syndrome, chronic lyme disease (esp on West coast), multiple chem sensitivities, etc and you will this almost as S.O.P.

  5. #5
    Moses Correa is offline Senior Member
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    I am so sorry for your frustration. It can be hard when all you want to do id get better and you are willing to work and get no where, due to lack of direction.

    Have you considered trying chiro., massage, acupuncture etc?

    Also here is a link of some people that could help you: http://neurokinetictherapy.co/certified-practitioners
    Best wishes and I hope you get this resolved so that you can move on in life and fitness.

  6. #6
    adammcallister is offline Junior Member
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    Dude, I have been there. Our medical system is broken. It's expensive because there are big strains placed on it. There are big strains placed on it because you have to go way too many times for a possible result. To be honest, I'm with you. Some people give these medical professionals the benefit of the doubt, and they're intentions are in the best place, but they work within a broken system. They can have no idea, or be wrong, partly because they are cramming as many 10 minute visits in as possible for money, and they will rob you. Then some really do not care. They're burned out, went into the wrong career, or are doing it for the wrong reasons, and it is expensive to figure out who to actually trust. It is the entire system that has let things get this bad, and many good doctors are forced to operate within it and are limited. They simply are stretched too far to consider actually sitting down, reading into the deeper layers of your problem and figuring anything out. I wish I had an answer for you, but I figured at least acknowledging your position on medicine would at least be a psychological boost. When I had to go through my knee issues it was frustrating and just having someone acknowledge that it was the system failing and not me being stupid helped me a lot. All I can say is that the more you read and study these things yourself to the point you can be conversational with their jargon, the farther you can get. Unfortunately many doctors just don't have the time to ask probing questions, but if you can talk to many of them in medicalese and connect a lot of dots yourself, you can get a bit farther by sparing them effort (wait, why are the expensive then? I know) and they can quickly rule things out, which is easier. These days if it is not a textbook quick shot diagnosis, and it is outside that individuals experience, you're screwed and out of the money. Most doctors do not want to be bothered with something difficult because if they're wrong it can be malpractice but of they're very conservative about it they can play it safe.

    In my experience, PTs are horribly incompetent. PT itself is good, but many therapists don't even administer it properly. Almost can't blame them. You need a doctorate and half of the training of a doctor to make what a skilled welder does. But my experience with PTs has been terrible as well. I skip them for now.

    And I completely agree with you despite what some more naive people would say, they usually don't care. They get paid and they don't have time to think about the ethics of something that is legally ethical. Most of these people are from another planet.

    I would suggest finding pdfs of textbooks and browsing those. Subjects like anatomy and physiology (skim different ones because some discuss different diseases, pathophysiology, orthopedics, and reference books. Look at diagnosing criteria and see what the best fit is. A lot of times diagnosing is just that, what fits the best, it's not always cut and dry. But you will always know YOUR body better than the doctor.

    Good luck to you.

  7. #7
    GreenSoup is offline Senior Member
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    Check out MobilityWOD | All human beings should be able to perform basic maintenance on themselves. to see from their videos if what they are doing is sufficiently different from what you have been doing, then see if a web consultation might help to provide a custom program for your needs. They are supposedly miracle workers in some cases. At Dragon Door the FMS system is also supposed to be helpful for some types of recovery (I am not an expert on it so someone else may say something). Use the search feature from the Instructors tab to see if one is in your area and ask if it might be useful. God bless and I hope you can experience relief.
    Moses Correa likes this.

  8. #8
    Bradley is offline Senior Member
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    Quote Originally Posted by GreenSoup View Post
    Check out MobilityWOD | All human beings should be able to perform basic maintenance on themselves. to see from their videos if what they are doing is sufficiently different from what you have been doing, then see if a web consultation might help to provide a custom program for your needs. They are supposedly miracle workers in some cases. At Dragon Door the FMS system is also supposed to be helpful for some types of recovery (I am not an expert on it so someone else may say something). Use the search feature from the Instructors tab to see if one is in your area and ask if it might be useful. God bless and I hope you can experience relief.
    Gah. Kelly seems helpful, but there's too much to sort through, and he doesn't provide a good way to figure out what you need to do to fix particulary problems.

    Anyway, I don't think this kind of thing can help me. I have a misalignment. Mobility has NEVER had the slightest impact on me.

    I actually paid the $100 and had a phone consult with Kelly about 2 years ago. I did couch stretches for a long time but it never helped.

    My problem is a mystery and no one is interested in solving it.

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