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Old 07-09-11 | 11:41 PM
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Bob S
Junior Member
15 Anniversary
 
Joined: Jun 2007
Posts: 139
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From: Sonoma Valley

Bikes: Specialized Creo Comp Carbon DeSalvo Custom Ti

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
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