Saturday, December 6, 2014

After years of experiencing painful hot flashes, a VA doctor in SA ordered an upper spinal MRI under the pretext of finding the cause of the chronic pain in my elbows.  What he wanted to prove was I had a pituitary gland problem - and he did.  This neurologist is so brilliant after nearly ten years of me suffering horrific neuropathy and being told by quacks every excuse under the son as to its cause, this doctor diagnosed a tear in the annulus tissue as the source of the problem - no MRI - just listening to me.  He then proved it through a fluoroscope and 9 procedures later the tear was fixed and the neuropathy was resolved.  He also tried a medicine to help me with Circadian Sleep Disorder.  He could not prove I had it - he was already well outside the basis of my referral.  So we tried a medicine which did not work.
If I can convince the VA to move forward on the surgery I will not longer need testosterone replacement therapy, vitamin D replacement therapy, my CPAP, and will in all likelihood loose 80-100 pounds.
What this original neurologist did for me was force the VA to do a full endocrinological work up. 
But then the doctors assumed I had Andropause.  This mistake was made because of incomplete testing.  When my testosterone dropped to 35 [anything under 200 requires treatment] while on Androgel, I requested that my FSH and LH be tested.  This resulted in the diagnose being changed to secondary hypogonadism.  We now knew the source of the problem was the hypothalamus.
A side note - doctors to my amazement still believe every man is the same.  They come up with these middle age myths and then call them science .  Androgel is in fact being sued all over the U.S. because in their original ads they lead doctors and patients to believe these middle age myths as being true.
I cannot speak for very man - I can only speak  for myself.
Even when my testosterone dropped to 35 my libido was still that of a teenager [which I hate BTW] and while I am no longer 40, there was no evidence of ED.  So the claims that low testosterone causes loss of libido and ED in my opinion is a myth,  There has to be something else going on which the medical community has yet to identify.  But doctors based on this middle age myth prescribed Androgel to men with low libido and ED who had normal testosterone and in some cases the men had heart attacks - hence the lawsuits.
While the original neurologist suspected the hypothalamus all along he was beyond his authority of treatment and encouraged me to dig deep into the research at the National Institute of Health and be my own advocate.  I did.  This is how I was able to force the testing of the FSH and LH.
My doctor sent me to a new neurologist to rule out seizures.  I maintained it was the hypothalamus which something the endocrinologist was pushing as the explanation.  But that is yet another problem. 
Insurance companies kill - the Republicans are liars and kill.  Remember them telling us they opposed the government getting involved in our healthcare decisions - what they really opposed was the government overruling the insurance companies who decide what treatment we can and cannot receive/
Protocols are used by insurance companies, the VA, Medicare and Medicaid to deny healthcare.  You see the protocol developed by insurance companies - effectively - says you treat the vitamin D deficiency and low testosterone and not worry about doing advanced testing on the hypothalamus.  According to protocol nothing will change in terms of treatment so why bother with the advanced testing.
I will tell you why.  Because without the advanced testing you cannot get the full picture. Well this new neurologist through reviewing my old medical records and new advanced testing proved Circadian Sleep Disorder - its the clock in your head.  "our body’s biological clock is present in your hypothalamus. The biological clock is the circadian rhythm that changes your mental and physical characteristics according to whether it is day or night

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This diagnosis got the VA to approve the Nuvigil.  If I can convince the VA to do the surgery I will no longer need the Nuvigil, Androgel, vitamin D2, Zetia, or Lisinopril for blood pressure.
Mind you nearly all of the research has been done by me using the NIH web page.  The good news is the medical school in Houston has done research on the surgery and in their experience there is a 93% success rate which is consistent with the NIH.  This is important because they are tied to the VA Houston. 
My problem is, doctors out of fear of malpractice fear going outside of protocol.  My challenge is to convince the endocrinologist now that the neurologist has proven there is no doubt the problem is the hypothalamus and it is no longer mere theory, to agree to the surgery.  I will bring him everything from the medical school in Houston.  If he recommends the surgery then my VA doctor will refer me to the proper specialists who do the surgery and the final decision will be theirs - but at that point I will have ready to go all of the research and findings by the specialists at the Houston Medical school and Houston VA which shows a success rate of 93%. It is all FDA approved, but not yet written into the protocols. 
This has been a journey of more then 10 years.  I have documented everything and learned more about advanced endocrinology and  neurology than I ever though imaginable - but I am seeing light at the end of the tunnel.
The only thing we do no know because the research is inconclusive is, will the surgery pull the fat away from the heart, lungs and liver.  There appears to be no rhyme or reason as to why in some cases the fat around the heart, lungs and liver resolve themselves in some and in others it does not - but then that is part of my point - contrary to protocol - we are not all alike.


Anonymous said...

Great news!

Anonymous said...

Bobby, I agree with you, people need to be their own advocates for their healthcare, your experience proves it.

Also, a good physician uses testing to confirm his diagnosis instead of the other way around.