Tuesday, September 29, 2015

What is the Diagnosis???

{Please note, there are links in this post to outside sources}

For the past almost 2 years, life has been more and more difficult.  I can barely function.  I can barely make it as a mom some days.  I want to keep the house clean and tidy.  I want to help the kids in school and with their homework.  I can barely think of the right words most days.  I am really good at laying down or watching TV or reading, but that is all.
Let me back up a bit.
In the fall of 2013 I ran a marathon. It was so amazing!!!  I can say that now because it is over.  It felt so good to say "I have run a marathon!"
About a month later I started having pain in my hands and feet.  It got so bad that I can no longer wear socks to be (which I did every night, even in summer).
Then I became extremely dizzy.  I was diagnosed with Mal de Debarquement or "MDD" about 9 years ago after a boating trip we took as a family.  Though I had gotten better, the symptoms returned and are now in full force.  
At the beginning of 2014 I went to the doctor to see what could be done.  He referred me to a neurologist. I went to see the neurologist a few times.  he mainly just gave me a bunch of medications.  It made me feel like I was always in a fog.  In fact, I was involved in a fender bender and decided to quit driving until the medicine was out of my system. 
After that my shoulders and neck began to ache.  Sometimes it would be so bad I couldn't move.  
The pain in my feet and hands started spreading.  My legs and arms now hurt.  
A shocking sensation started next.  I would be doing whatever, then it would feel like I was being electrocuted.  Just a zap, but it would unnerve me something fierce.  
Another symptom I didn't mention earlier, but is also debilitating, shaking hands.  I can't do much anymore.  Put on make-up.  Needlepoint.  Writing.  Even signing my name is so difficult. It is probably the most frustrating thing.
So I went back to my doctor to find out what else I could do to feel better.  He sent me to a neurological specialist team.  They did a bunch of tests.  After looking at everything, and starting to believe I was just making it up, they all of a sudden jumped up and said, "You have Status Migrainosus!"  They were about to walk out of the room, when we asked them what to do.  We were told that our family doctor could help with it.  
So we tried that route.  But the drugs that our doctor suggested didn't work.  Almost made the problem worse.  
So that was about a years time.  Finally I decided to take a break.  It was the holidays, then it was our daughter getting married.  After that, I finally went back.  I was ready to try once again.  So our doctor referred us to a specialist.  I remember reading her profile and being so excited.  She totally sounded like someone who could help!
Now I thought it was horrible trying to get into the last guys, but this seemed to be the worst.  First of all, the secretary kept forgetting or something to get a hold of the specialist.  I would call and call, with nothing.  Then it seemed that the specialist's office lost things, or didn't write things down, or something. It was 2 months before they even had me on the waiting list!!!  I kept thinking that maybe I wasn't supposed to go see this doctor.  That maybe I was supposed to get use to how I feel. 
I finally got in to see her, the migraine doctor, last week.   She actually took me seriously.  It was amazing.  She had a team of doctors who listened to my symptoms, and worked together to figure out what to do.  
For now I am trying a sleep aid, that also helps with depression, so get that part of my body working correctly.  I am also going to start exercising again, once my toe is healed, but that story will have to wait until later.
I am finally hopeful that this will go away, or at least be manageable.  I cannot wait. Pin It


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