Lets talk about health

     Lets talk about health.  Our own personal health is in our hands.  Sure we require doctors, specialists, and even the occasional home remedy help, but ultimately its in our hands. 

     When you know that something is off with your well being, you should not ignore it.  Listen to it and listen to it good!  You will be the only person who knows that something is "off" in your own body, kind of like a warning, before any one else will...well until its no longer a warning and it becomes a "in your face" situation.  I have been able to deal with many things due to my stubbornace and my high tolerances of pain and such.  However, I will be the first to admit, I didn't always listen to what my body was telling me.  For over four years now, I have experienced headaches/migranes AND head pains, along with tremors, memory issues, just to name a couple.  But just a little over three years ago, I decided I had had enough and it was time to go see my regular doctor.  I stumped him, even after the xrays and cat scans.  So, he sent me to a neurologist in another city to see if he could figure out what was going on.  Well, we went through the spinal tap process, the mris, the blood work and started on different medications.  Then IT happened, the first "in your face" thing, I had a small seizure, thankfully not the grand mal type, but was just below it.  That began my, might as well say lifetime of Keppra medication, to help prevent any other seizures.  Since then I have "spaced out" as my husband calls it, in the middle of conversations, which apparently are called focal type seizures, from time to time.  The neurologist initially suspected PTC, also known as Pseudo-tumor cerebri, because of the above normal borderline amount of spinal fluid and clear scans.  We tried different medications, some either caused me to have a reaction while others did not work.  So, he sent me to another neurologist in another state, less than 3 hours away, to see if they could come up with any ideas or solutions.  Lets just say it was a big waste of time and money.  People if you feel like you are getting the run around in your gut feeling ....trust it and don't waste any more time.  This particular neurologist spent less than 25 minutes with me and my husband, did NOT listen to what I was experiencing and to top it off she said oh its probably nothing.  Say WHAT?!  I couldn't wait to get out of that place.  When I returned back to my regular neuro, he asked how it went.  My first comment was I will not be going back there again and I don't care how "good" shes supposed to be.  He looked at the notes the other neuro provided and seen that there wasn't much of anything in them and was actually disappointed and sorry for us to have to experience what she did and did not do.
 
     Okay, so lets fast forward a little bit.  My regular neuro now sends me to a md optometrist in the area hes at.  The first one I dealt with for 6 months, just told me my optic nerve pressure was a little high.  He then left the practice and I got another one.  The new one says, your pressure is still high and oh you have Fuchs Corneal Dystrophy.  I asked him to explain what that meant, which he did.  Which then meant I had to tell my family members make sure to get tested, including my own children.  Okay, so now I take my daughter to an opthamologist at a nearby center and have her tested, and shes got some pressure but will be fine for quite some time, which is definitely good!! Now, I end up seeing the same opthamologist as she does as she specializes in FCD, and she ends up sending me to a neuro-opthamologist in another big city, but is supposed to be very good.  Okay, so I go to this neuro-opth, and for this consolutation I am there for 2, yes TWO, hours, all tests and talking and her listening to what is going on.  Well, on the second visit to her, as well as another spinal, she clears me of PTC, BUT ADDS in that I have three small optic nerve gliomas. Well, I guess I should start keeping a sheet of everything I am diagnosed with for certain as well as my experiences.

     In the meantime, of seeing this neuro-opth, I get a second IT, gonna be "in your face" again, since you aren't catching everything I am sending you, message from body.  I experience the first ever bout of what the hospital termed it "Aphasia".  This occurred one year ago from yesterday.  The regular neuro is still trying to figure out what caused it, as are we.  I will say, its not fun when you can't speak to someone, in normal English language that is, and they can't understand you.  I went from speaking another "language" and not being able to write correctly for 24 hours, to the next step of speaking with slurred English words, but able to sign language (unfortunately my husband didn't know much of sign).  I wasn't able to speak very good for over two weeks.  Many people when they ask you a question when you are experiencing this aren't ready for the response that comes.  I would try very hard not to be in an aisle by myself and in those cases where I ended up being in it by my self, I would limit the amount of words said.  I was not wanting pity and definitely was not wanting to be shunned either.  I just wanted to keep to my personal self. 

     Since last January, I have experienced this speech condition even more often.  Not only that, but even though it seems like I am able to come up with alot of words and probably seems like it didn't take me long to write this.....I will confess its been almost two hours of writing this.  The words don't come as clearly and the spelling needs help on some words.  I went from being in college as an adult and being on the vice presidents list to some one who has lost a number of brain cells due to whatever is causing this health deal.  On the plus side, I hope anyway, I am scheduled to see another neuro who is "supposed to be specialized" in the area of which I am having problems.  Lets hope she can answer my many unanswered questions and is able to read the scans of which she requested!

    The whole idea here is for me to say to you, to listen to your bodies.  Doctors and the like can't help you figure out your health issues if you cannot tell them whats going on.  Also, if they don't seem like they are listening or want to, MAKE THEM HEAR YOU.  If you don't get anywhere with them, look for another doctor.  And its better if a doctor admits they don't know whats going on and if they in fact refer you to another one who might be able to help  you.  If that consult goes good then its a plus in your favor and for your health.  One more point, I don't mean to down grade any doctor or radiologist, but I can say for certain that radiologists don't always catch the small things on scans (for example my gliomas on my optic nerve--they are clearly there but were not noted in any scans report---which is why we think they are missing seeing a possible avm--which fully describes everything I am experiencing (seizures, tinnitus, other vision problems, vertigo, memory issues, etc).  Of one more point of interest, its ALWAYS important if you know your family medical history and it doesn't necessarily have to be just your parents and siblings...make sure to include your grandparents, uncles, aunts and so forth, because they can actually provide an insight to what you may be experiencing.

     In closing for today, I am going to add a few links regarding some of the health things I have been diagnosed with or experience....in case you are interested.  Wish you all healthiness and wellness and peace!!

   The Internet Stroke Center on Aphasia:
http://www.strokecenter.org/patients/caregiver-and-patient-resources/aphasia-information/

   Tips for family members who have someone who experiences aphasia in the home:  http://123amylou.wordpress.com/2012/10/14/tips-for-aphasia-in-the-house/

     The American Heart Association on AVMs:
  http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

    Another link describing a Cerebral AVM:
  http://brainavm.uhnres.utoronto.ca/malformations/brain_avm_index.htm

    WebMD link on Fuchs Corneal Dystrophy:
http://www.mayoclinic.com/health/fuchs-dystrophy/DS01147

   Medline Plus link regarding Fuchs Corneal Dystrophy:
http://www.nlm.nih.gov/medlineplus/ency/article/007295.htm

   Mayo Clinic on Aphasia:
http://www.mayoclinic.com/health/aphasia/DS00685

   Link regarding Optic Nerve Gliomas:
http://www.braintumor.org/patients-family-friends/about-brain-tumors/tumor-types/optic-nerve-glioma.html