Thursday, July 1, 2010

Just a tidbit of an update.

The neurologist called and said the mitochondrial microscopy showed normal structure for mitochondria.

Dr. O is going to do a slew of labs, some looking for an interesting disease called Wilson's Disease. Like everything else I have tested for, Wilson's Disease is genetic. It is a genetic defect in the liver, causing it to lose the ability to process copper appropriately. When that happens copper builds up in the liver, kidneys, eyes, and brain. Excess copper causes psychological and neurological symptoms like mood changes, tingling, seizures, etc. In the liver you may not see symptoms until it is severe, thus causing cirrhosis, fatty liver, liver failure and a change in liver function tests. It can cause defects to occur in the connective tissue in a certain number of patients. Other problems include swallowing difficulty, speech difficulty, brain fog, anemia, low WBC's, and others.
One of the diagnostically most obvious signs of Wilson's Disease are the Kayser-Fleischer Rings that develop around the cornea edges of the eye. They appear as a brownish color or even sometimes a greenish-brown, reflecting the color of the build up of copper in that area.

I don't think this is it, but I have had abnormal liver labs, and most of the symptoms attached. I don't think I have the Kayser-Fleischer rings, but in most patients they don't show up visibly to the naked eye until the copper build up is very severe. I have an eye appt set up for July 13th to look for this or other eye problems that might help explain what is going on. I am utterly surprised that the eye doctor I went to last year did not find anything wrong since I have such an array of eye symptoms like crazy flashes of light, night blindness, trouble seeing in the dark, floaters, blurry and double vision at times, eye pain and pressure. But I have been told before that these can also be explained with any number of neurological problems.

I read an article, and I so wish I could remember where so I could give credit where credit is due, saying that caffeine and chocolate help the kidneys excrete excess copper, which would make sense if that is what it is. It would explain why I feel "normal" rather than supergized after a Monster or two. Or why I crave chocolate so much, but never any other sweet and why the craving is intense like thirst. This thought is confusing to me because the NIDH article I read states that chocolate is high in copper and should be avoided during initiation of treatment. Maybe it is the caffeine content in the chocolate that helps? I don't know. In the unknown article it described how the adrenals are also affected by excess copper, although I can't remember the outcome from my lovely brain lapsing. I do remember it mentioning Cushing's and Addison's, so that is interesting.
But, like I said, it doesn't fit everything, just an educated guess very much worth investigating because without proper treatment it is life-threatening from liver failure.

Treatment is a medication that assists in removal of excess copper and in very mild cases zinc does the trick. Even as a nurse, I didn't know that zinc plays that very important role in our body. It's amazing how we must maintain the very specific balance of mineral and vitamins in our bodies for optimal health and how one negative tip of the see-saw can be so catastrophic. If it is left unchecked for to long the result may be a need for liver transplant. And ironically, liver transplant will "cure" the genetic disease because it exchanges the injured liver and it's defective genes with normal liver genes. How strange is that? But, medication is first line treatment over liver transplant. If a person is diagnosed with it all first line relatives should be screened.
Lifelong treatment can control the copper buildup, but questions still exist as to whether it eradicates the damage done by the copper build up. Some studies suggest that as much as 50% of people treated will continue to have psychological/neurological damage and symptoms.

Foods that are high in copper: nuts, chocolate, tap water (especially if copper pipe is used), potatoes, tomatoes, avocados, liver(duh...ewww....), mushrooms, seafood, raisins, any tomato pasta sauces, wheat flours and whole grains, most beans and many more. Normally an adult body can excrete any excess copper if the liver is functioning properly. Certain other liver and bile diseases can cause copper excesses also.

She is tested for other things as well like the cortisol, autoimmune markers, thyroid, etc, just to retest them. She has also scheduled another MRI of my brain, swallow study and esophogram and a neuro-psych eval to test my memory, stress management, etc. The neuro-psych eval is borderline offensive in my book because whenever you think psych eval it automatically leads you to think: crazy, but I understand the importance in that it can help determine how I am dealing physically with the stress.

Last thing is a lumbar puncture looking at the CSF pressures and if there are any foreign proteins, etc in it.
I apologized to her for being a "nightmare" of a patient, and I really do feel bad that I feel so insanely horrible and nothing seems to line up. I have symptoms that lead to "a little bit of this" and "a little bit of that" but nothing concrete, and that is disheartening to both patient and doctor.
I remember all to well at work having those patients. The ones that I couldn't fix no matter what I tried! I would do everything under the sun to help their hurting and it was ineffective. Sometimes with them it was just time they needed, sometimes it was something off the wall and obscure that I would never have thought of in a million years, but those are the times that drove me to want to learn more and become a nurse practitioner so that I have the authority to do the tests needed that doctors would refuse me until I pleaded with them and they gave in on the grounds of "getting the nurse off their back". Most times i was right in the testing, but patient advocacy was my job, to fight for their pain until someone would listen to me and fix them.

Being on the opposite side, being the patient needing advocacy and trying to realize that I am worth fighting for is new territory to me. I always ask myself: How far is to far to push for help? When do I "give in" and accept that they may not figure it out? And it's that mind set that makes me remember that I do not have to settle for feeling mediocre instead of at my best!

Physical mediocrity is not me at my best.

Update 7/13/10: No Kayser-Fleischer Rings per the ophthalmologist, no copper abnormalities per my doctor, so no Wilson's Disease. Thank You God!! =)


  1. I'm not up to much blogging or commenting right now. In truth I haven't even been able to read the whole post. Just wanted to say - some with EDS are known to have Wilson's and some with Behcets if I have spelled that correctly.

    Looking on the bright side. At least you know what you don't have!

    Take care love Achelois xoxoxo

  2. I'm sorry you aren't feeling well my penpal friend!! I do miss talking to you. But I do understand that you need to take care of you too! Even online stuff can be taxing and require so much when you have little to give. =) Thanks for letting me know. I will let my doc know and se what I can find about the other one. =) Missing you! xoxoxo

  3. May I suggest Fullhealth multi metal D-Tox, clears heavy metals in the body. I have used it and know it work. You can download a free e-book about it at It's the best I have come across. I have put the website address for anyone who needs it.