Hello All,
I haven't posted here in quite some time.
But in that time, I conducted a great deal of research and discovered that some experts believe that many cases of PCS may actually be neuroendocrine dysfunction, hypopituitarism, isolated hormonal deficiencies or insufficiencies or something along that line.
Experts, doctors and researchers are discovering (mostly from all the veterans returning from the wars, but also from athletes and other concussion victims) that the long term symptoms that are misdiagnosed as PCS are actually caused by neuroendocrine dysfunction. And that once these people are properly tested, that if they do need treatment that the treatment eradicates the symptoms.
Depending on which study you read, it has been determined that between 18-52% of concussion victims are suffering from neuroendocrine dysfunction that is treatable.
Most neuroendocrine dysfunction will resolve itself within the first year after a concussion, which is ideal. You want it to resolve itself. But for those of us who continue to suffer after one year, you want to get testing and then treatment if you need it.
I sought testing and expertise.
I was referred by my Dr. to an endocrinologist who then referred me to another endocrinologist.
The second endo told me a lot of things that completely contradicted the research I had done - that I had brought with me and had in my hand when I met him. But I didn't have the energy to fight him, or the cognitive wherewithal. He told me that he couldn't help me because he didn't think that my issues were endocrine-related and that I needed to see an neurologist.
I paid out of pocket to see an endocrinologist who doesn't take insurance at all. He is a professor at UCLA and primarily a researcher.
He actually quoted the research I had in my hand without me having to take it out. He's written about it. He agreed that what was wrong with me could be endocrine dysfunction caused by that severe concussion that I sustained in the car accident almost three years ago that was still disabling my everyday living.
He ordered tests.
One of them proved that I now have a growth hormone deficiency that was most likely caused by the concussion. (I was high energy and higher-functioning before the accident and well below average in both physical and cognitive functioning after the accident and that degraded functioning lasted until more than three years after the accident, until I recently started hormone replacement therapy.)
I have been receiving treatment in the last two weeks and I have improved a great deal. It could take up to a year to get the right dosage correct.
But I am doing better!!!!
I'm very excited about the near-miraculous improvement and I'd like to encourage everyone who is suffering from PCS for over a year to seek out an endocrinologist to order tests to see if your symptoms can be resolved through hormone replacement therapy.
Many doctors, and sadly even endocrinologists, aren't well versed in concussion induced neuroendocrine dysfunction.
What I am referring to is some of the latest research. And you may find it difficult to find an endo with experience with this sort of thing, but they are out there and they are trying to educate their colleagues.
I will post links, as I'm able to.
But here are just a couple made by the Defense Center of Excellence, who has a lot of experience treating veterans with NED:
http://www.dcoe.health.mil/MediaCent...sfunction.aspx
http://www.dcoe.health.mil/Content/N...rence_Card.pdf
http://www.dcoe.health.mil/Content/N...mendations.pdf
http://www.dcoe.health.mil/Content/N...ing_Slides.pdf
Sadly, even though much of this research is being conducted by the DCOE, the doctors and endocrinologists in the VA hospitals are still unaware of it - I've heard that from veterans who have gone in for testing.
I paid quite a bit of money to see the specialist and some of the testing, but my HMO has approved the treatment and the treatment is already making me feel better and function better, so the out of pocket cost for me was well worth it.