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  1. #1
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    Medical Misdiagnosis

    I am going through a series of tests, say more than 10 blood tests and counting to determine what is wrong with me. Since 1999 I have been treated for a chronic anemia, first it was Aplastic Anemia later called Refractive Anemia and recently Refractive Anemia - mild Myelodysplastic Syndrome. None of these are good or are they very common or easy to diagnosis. There is no curative treatment, just something for the symptoms, fatigue and very low energy. I was in my early 50s when I first saw the Hemotologists and have consumed way beyond a couple hundred thousand dollars worth of EPO (Procrit & Aranesep). Yeah the stuff that builds up your hemoglobin=oxygen and red and white platelets and gets you thrown out of races. It was not fun, but at least I was still able to ride about 1/4 as much as before.

    This past winter I went to a nutritionists as I developed Acid reflex, during one of the appointments I mentioned how cold I was all the time, even indoors, I was wearing a full set of light wool long underwear, sweater and polar tech. She recommended I get my Testosterone levels checked about 4 different ways. Well I the tests showed I have virtually none, yeah zip. So this lead to an Endocrinologists who found that I also have Adrenal and Pituitary deficiencies. Yesterday I had an MRI of my head, 45 minutes with my head inside a mask like device inside the machine, so not fun. The final report is not yet in but preliminary it does not look like a Pituitary tumor. So now I am on Hydrocortisone, a thyroid pill, and in a few more weeks Testosterone therapy will be added. There is the possibility of more pills and potentially surgery if it is determined that they need to remove the small thing on my Pituitary. That Anemia thing is probably history as one of the therapies will finally treat the underlying cause.

    So not one of the MDs I have seen over the past 12 years ever tested any of the most important hormones. Worst of all I have not been able to ride as much or as far as I was use to, second 100s of thousands of $$ spent on medication..., third some not perfect business decisions forced on me due to fatigue. All this for the lack of a couple of blood tests. The moral of this story is if you are reading the 55+ board make sure your doc checks all your hormone levels especially if you are fatigued or have any health changes. Make sure they are not just checking the boxes or saying you have some syndrome with out further tests.

    I will ride in the morning but it will take a long long time to build my legs up to where they used to be. So today I can happily say I will be 65 next month and I am looking forward to longer rides and bigger hills and mountains. Bob

    I learned a while ago that medicine is more art than science. We are such complex beings there are just to many possibilities for any approach to work for any unusual diagnosis like mine. I am looking forward to riding. My Best Wishes to all bikers....
    Last edited by Bob S; 07-10-11 at 10:32 AM. Reason: Additional information

  2. #2
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    When your only tool is a hammer... Don't be too hard on the physicians. Most of them are not very well trained to solve mysteries, they're better at applying the same treatments that have seemed to work on similar cases in the past.

    That said, your story is a great motivator for all of us to be persistent in pursuing proper diagnoses.

  3. #3
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    I have a doctor friend who 30 years ago told me doctors were idiots. Over time I've come to the same conclusion.

  4. #4
    Senior Member John_V's Avatar
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    I don't know about you, but I remember when I used to fix my own cars, tear down the engine and rebuild it and have everything run as if it were new. Can't do it now, too much specialization and advanced electronics. The engine is the same, it's just everything else that has changed. Kinda the same with medicine. It's become so complex anymore because doctors don't want to face litigation that every part of the body has a specialist for it.

    Several years ago, I was on a diet and loosing weight like crazy. I thought that the diet was amazing because of how much weight I was loosing. Then came the fatigue which was attributed to the weight loss and I was told to back off on the diet. Kept loosing weight and getting more tired. Went for some blood work to see if I was anemic and walla, ..... extremely high white blood cell count. Went to a hematologist and was diagnosed with leukemia and was asked to make a followup visit to start my treatment. I did that and went in to see the doctor and he was called out of town for something and I saw his partner. His partner looked at the test results and wondered why a specific test was not run. So I had a BCBR Gene Rearrangement test done as well as a bone marrow biopsy and found that I did have leukemia, but instead of the acute leukemia that I was going to be treated for with chemo, I had a chronic leukemia (CML) that is treated very well with a medication and that was determined only by the BCBR test. The treatment for this type of leukemia would not have responded very well to chemo without other medications and had I not had that second test, the chronic leukemia would have turned into the acute type and I most likely would not be sitting here writing this message. I'm now seeing the second hematologist.

    I've had the leukemia for a little over four years and also have anemia. We are trying to find the cause of it as my red cells, hemoglobin, and hematocrit have been constantly below normal since after the radiation therapy I received for my prostate cancer (another story in itself). However, that was three years ago and the effects of the radiation should have worn off to the point that it shouldn't be causing the anemia. So far, the anemia hasn't affected my riding as I am able to do fifty plus mile rides and I really don't feel tired. BTW, I will turn 65 in October.

    Just don't let all this bother you. You can't worry about what you can't control. It will drive you crazy. Do what you think is best for you and keep enjoying live to the fullest. For me, just waking up in the morning means it's going to be a great day.
    HCFR Cycling Team
    Ride Safe ... Ride Hard ... Ride Daily

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  5. #5
    Senior Member Looigi's Avatar
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    The fundamental problem is that to the doctor you're just one of 1000s of patients. Doctors are really happy if the get it 90-95% right. But what about those 5% they get wrong? To those individuals, it's their entire life and well being. Both my sisters are nurses and are all too aware of how careless and slipshod medical treatment often is. You need to be your own advocate and not placidly rely on the medical system. The internet makes it a lot easier to research issues and conditions. Sure there is plenty of misinformation out there, but there are also many legitimate sources of information...Mayo Clinic, WebMD, etc... Research these, and bring questions and information to your doctor. If they won't discuss it or take you seriously, get another doc.

  6. #6
    Senior Member bruce19's Avatar
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    I'm just happy to hear that you have found the real problem and are now facing a future that includes better health.

  7. #7
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    Quote Originally Posted by TheHen View Post
    When your only tool is a hammer... Don't be too hard on the physicians. Most of them are not very well trained to solve mysteries...That said, your story is a great motivator for all of us to be persistent in pursuing proper diagnoses.
    Good points here. When I was 61, I began to have occasional double vision. Several doctors looked at me and figured it was stress or one thing or another, and it would go away periodically so I'd forget about it. It took another couple of years and increasingly severe symptoms before it was diagnosed as myasthenia gravis. It was obvious once they found it, but MG only occurs in from 2 to 10 people per 100,000, depending on whose numbers you believe, and many things cause similar symptoms. I actually suspected it early, because I had a friend in high school whose mother had it, but it's pretty rare in men and the docs thought I was suffering from an overdose of WebMD.
    Not much harm done in my case, because they can only treat the symptoms, not catch the condition early and cure it.

  8. #8
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    Guess they found enough wrong with you to keep the boat paid for.



    Best of luck with your new treatments.



    At 65 I hope my boat is paid for. I hate working under sinks all day.

  9. #9
    Around now and then DnvrFox's Avatar
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    My wife has been going through a similar situation for the last 6 years. When, this last month, we went to an alternative medicine (not really- a nurse practitioner who has specialized in what my wife needs) our PCP doctor looked askance at us and the testing, turning his nose up a bit. Yet, he has not helped one bit over 6 years, and it was my wife who got him to test for vitamins, revelaing that she had practically no Vitamin D in her body. Without her demanding it, that testing would never had happened.

    The further testing the NP ordered revealed some significant other findings - our PCP said, "Well, I could have tested for that!" - but he didn't and never suggested it.

    It would be nice if our PCP viewed the NP (who spent 2 hours with us) as an Ally, and not a foe, and they could work together. That is not going to happen.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  10. #10
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    It is much more helpful to look at your doctor as a mechanic just like the one who maintains your car except what your doctor is maintaining is a lot more important. There are good ones and not so good ones. There are intelligent ones and ones that are just good at memorizing protocols and occupation specific language. There are those that are money oriented and those that are Staff oriented and those that are Patient oriented.

    The problem is how to find those in your area that are intelligent, inquisitive and patient oriented. At this point in my life I just don't have a good universal method.

    In my current situation I have met with all three kinds of medical professionals. If it weren't that I'm such an assertive/aggressive(I'll let Denver pick the correct one) person I'd stilll be muddling around instead of heading to a potential solution. Plus, my wife has been and is a real loving support who has a sense of what kind of person we are dealing with.
    It is better to smell the flowers than taste the roots.

  11. #11
    Around now and then DnvrFox's Avatar
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    The problem is how to find those in your area that are intelligent, inquisitive and patient oriented. At this point in my life I just don't have a good universal method.
    As you reach the Medicare age, you will find less open doors to MD's. Many practices are closed or limited.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  12. #12
    Let's do a Century jppe's Avatar
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    If you need more hormones I can send some of my sons to you!!

    Seriously best of luck getting it all squared away and back to a more energetic state. Dealing with health issues is not fun and is especially unnerving when you really don't know what is wrong.
    Ride your Ride!!

  13. #13
    Senior Member Kurt Erlenbach's Avatar
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    Quote Originally Posted by Bob S View Post
    I learned a while ago that medicine is more art than science.
    Truer words are rarely spoken. On top of that, we are all conditioned to believe that it's almost all science, and not art. In truth, it's a strong combination of both.

    The moral of the story is that it's very important to take control of your own health care. As we get older, the aches and pains and tiredness seem to come with the territory. To an extent that's true, but not always. I think it's a good idea to insist on extra blood testing - it's relatively cheap and can lead to significant diagnoses, either preventative or curative.

    And, having gotten a few shots of Aranesp while doing chemo a few years ago, I can attest that it is magic juice. Just a few points on the hematocrit make a big difference in how you feel.

  14. #14
    Senior Member Wogster's Avatar
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    Quote Originally Posted by Bob S View Post
    I am going through a series of tests, say more than 10 blood tests and counting to determine what is wrong with me. Since 1999 I have been treated for a chronic anemia, first it was Aplastic Anemia later called Refractive Anemia and recently Refractive Anemia - mild Myelodysplastic Syndrome. None of these are good or are they very common or easy to diagnosis. There is no curative treatment, just something for the symptoms, fatigue and very low energy. I was in my early 50s when I first saw the Hemotologists and have consumed way beyond a couple hundred thousand dollars worth of EPO (Procrit & Aranesep). Yeah the stuff that builds up your hemoglobin=oxygen and red and white platelets and gets you thrown out of races. It was not fun, but at least I was still able to ride about 1/4 as much as before.

    This past winter I went to a nutritionists as I developed Acid reflex, during one of the appointments I mentioned how cold I was all the time, even indoors, I was wearing a full set of light wool long underwear, sweater and polar tech. She recommended I get my Testosterone levels checked about 4 different ways. Well I the tests showed I have virtually none, yeah zip. So this lead to an Endocrinologists who found that I also have Adrenal and Pituitary deficiencies. Yesterday I had an MRI of my head, 45 minutes with my head inside a mask like device inside the machine, so not fun. The final report is not yet in but preliminary it does not look like a Pituitary tumor. So now I am on Hydrocortisone, a thyroid pill, and in a few more weeks Testosterone therapy will be added. There is the possibility of more pills and potentially surgery if it is determined that they need to remove the small thing on my Pituitary. That Anemia thing is probably history as one of the therapies will finally treat the underlying cause.

    So not one of the MDs I have seen over the past 12 years ever tested any of the most important hormones. Worst of all I have not been able to ride as much or as far as I was use to, second 100s of thousands of $$ spent on medication..., third some not perfect business decisions forced on me due to fatigue. All this for the lack of a couple of blood tests. The moral of this story is if you are reading the 55+ board make sure your doc checks all your hormone levels especially if you are fatigued or have any health changes. Make sure they are not just checking the boxes or saying you have some syndrome with out further tests.

    I will ride in the morning but it will take a long long time to build my legs up to where they used to be. So today I can happily say I will be 65 next month and I am looking forward to longer rides and bigger hills and mountains. Bob

    I learned a while ago that medicine is more art than science. We are such complex beings there are just to many possibilities for any approach to work for any unusual diagnosis like mine. I am looking forward to riding. My Best Wishes to all bikers....
    Seems kind of odd to me, a hormone panel is pretty much SOP for a 50,000 mile checkup here in Ontario, now that I am 50, I need to get the old colon scoped, not something I am looking forward to....

  15. #15
    Senior Member bigbadwullf's Avatar
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    Being a Doctor I can tell you many of them(especially the ones that have those nice, fancy offices with all the WOW FACTOR), rely on what they learned in school(which sucks usually....sorry) and what they READ and not LEARNING BY WHAT THEY SEE.

    We must have had this one condition listed on nearly EVERY TEST we had in school. You know how many times I've seen it in 20+ years of practice? ONCE! And it isn't anything you can do about any way.

    Many times, testing in school becomes more of trivial pursuit than teaching you how to THINK and understand what you SEE.

    But, that is why they call it a PRACTICE. You learn(or should) thru PRACTICING. I find many rely on what they learned and what they read about and not what they SEE HAPPENING BEFORE THEIR VERY EYES!

    Many get caught in the 'diagnosis du jour'. Meaning it becomes a fad to treat something just because they read about it. Or they have been told by business research firms what is the 'hot thing' that patients are looking for, or what is being advertised by companies.

    Now, with that said. Many times it becomes what YOU want to hear and what is 'popular' at the time. This is a horrible way to practice, but is certainly is lucrative for those that 'play the game'.

    Sorry. That might not be what you were wanting to hear
    Last edited by bigbadwullf; 07-11-11 at 08:58 AM.

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