Some good suggestions from Foggy.
It is quite a challenge for you, however, don't lose hope.
There are always things that can be done to improve your condition.
Please also look into the following:
1. Methylocobalamin B12 deficiency, which will not show on the mma B12 test.
You need a separate Homocysteine test which indicates Neurological B12 levels (methylocobalamin)
2. IGF-1 test for low Growth Hormone. Very important !
Deficiencies in this hormone are especially common in patients with moderate (possibly your case, since not much has been detected) to severe traumatic brain injury.
Growth Hormone has many important roles, one of them pertinent to you
is its remarkable function to increase the number of receptors for ALL hormones, throughout the body, thus increasing the body's sensitivity to these hormones, which is particularly useful to prevent the damaging effects of their deficiencies.
It also promotes the regeneration of nerve tissue and it helps extend the longevity of damaged neurons.
Your symptoms are consistent with unresolved hormonal deficiencies.
A brain injured patient, even mildly (subclinical TBI) with low growth hormone may show memory decline and impaired cognitive function,
similar to Alzheimer's Disease.
3. Free T3, Free T4 AND Reverse T3 for proper thyroid function testing.
Standard serum testing only reveals serum levels, not function!
4. Cortisol and DHEA levels.
Look into: Functional Adrenal Stress Profile – BH #201 – Cortisol x 4, 2 averaged DHEA-S by BioHealth Labs.
Note: This is not an endorsement, just FYI for reference purposes.
However, I have personally found these Labs to be efficient, accurate and reliable.
The ongoing biological stress, even if growth hormone levels are fine, will result in Adrenal stress, causing at first a rise in cortisol levels, which cannot be sustained indefinitely, thus resulting eventually in low cortisol levels.
There's an interesting article in the Natural Medicine Journal (June 2010 Vol. 2 Issue 6) titled: The Role of Cortisol in Sleep.
I have done specific research in this.
My mom a few years ago was hit by a drunken driver and suffered severe bodily injuries and moderate TBI with dementia-like symptoms, which improved somewhat with supplementation of GH, NDT ,grandulars and herbal supplements, Oh and coconut oil! Extra virgin organic.
Please let me know if you need details.
I hope this helps, however, I must note that my suggestions and comments are not intended as a substitute for medical advice.
I am very sorry to hear about everything you have been through. Often after an injury like you described, and this being the 2nd one (which means it is accumulative), you can have lasting effects to the brain. I'm very surprised that the Neurologists have not picked up on this. Please take a look at the resource links on the User site on this web forum here: http://www.medhelp.org/forums/Traumatic-Brain-Injury-TBI/show/1843
Your symptoms fit many of the post-TBI syndrome. There are some helpful tips and ways to cope listed there as well; I run the group.
I would suggest that you find a different Neurologist but one that is NOT affiliated with any of the others (a different hospital and possibly a different state) since they cover for each other. You sustained an injury that is impacting your life, you job and probably your social life and more. I can understand this. Let me know if you have any questions.
I did not know about the TBI user group and I'm glad you made reference to it,
so now I can direct people there, when it's pertinent to their question(s).
You seem to be knowledgeable and capable to run it.
Thank you for your response! I will look into the web page you gave me and i appreciate the help!
Thank you very much for your response. I am looking into some of these things that you are describing as we speak. Do you know what any of these tests, espcecially the cortisol levels and dhea levels would show up as on a blood test? I have had numerous blood tests suchs as CBC with differential and a comprehensive metabolic panel (both of which contain several different kinds of results), but nothing has been out of balance (according to my doctor). I know I have been tested for B12 and TSF (for thyroid) but I am not sure if I have had these particular versions of the tests that you are naming. I really appreciate your help and any additional info on what to look for to see if I have had these tests would really be appreciated.
I would suggest you look (If you haven't done it yet) into the" Functional Adrenal Stress Profile – BH #201 – Cortisol x 4, 2 averaged DHEA-S" testing by BioHealth labs* as I mentioned in my first reply to you.
It's a saliva test, which to my opinion is more relevent , as it measures bioabalable unbound cortisol, unlike serum testing which indicates t,otal cortisol as it measures also cortisol bound by blood proteins.
In the standard serum testing for hypothyroid, again it measures total hormone levels which does not relate to thyroid function necessarily.
This can only be established with certainty by testing for free T3, Frre T4 and Reverse T3. Otherwise, one can stay in perpetual medical limbo, pursuing other possibilities in vain, should thyroid dysfunction be indeed the main causative factor.
You probably meant TSH-Thyroid Stimulating Hormone and not TSF, right? It's kind of a useless test to my opinion if T3 does not make it into the tissues.
Adrenal stress, due to prolonged biological stress goes hand in hand with hypothyroid as secondary (which by the way does not rule out primary hypothyroidism).
It is a default survival mechanism, forcing a low thyroid state, to allow for adrenal recovery.
Should you have any methylation issues or MTHFR gene mutation, you
will be deficient in neurological B12 (methylocobalamin) and Methyfolate, even if your regular B12 and Folate show normal or high levels, when tested.
The standard test for B12 is MMA, however, regarding the aforementioned you need to have a homocysteine test.
You can forgo this, if you elect to do a Methylocobalamin and Methylfolate
supplement trial for a few months and should you experience positive results, then this would be very indicative of methylation issues.
Let me know if you need more details.
I have been on these plus MSM, EVCO (extra virgin coconut oil),
Omega-3 and Undenatured whey protein powder ( precursor to glutathione,the body's master antioxidant), for impoved brain and overall health.
Myself, I've had 2 serious traffic accidents with serious bodily and head injuries, however, you would not be able to tell if you'd meet me now.
Thank you again for your help. I meet with my neurologist again tomorrow so I will discuss these tests with him. I will update you as to what he says. Thanks!
Well, i just followed up with my neurologist. I talked to him about these concerns and of course he dismissed all of them without any justification. So i called my general care doctor and he order the HGH and cortisol test, yet he said that he didnt think we would find anything. My neurologist wants to send me to UVA where they might perform a PET scan to assess blood flow to areas of my brain. I will update with the results of the tests. Thank you for your input!