Tuesday, June 13, 2017

A diagnosis...finally

So, if you have followed this blog through the years...you are very aware of my journey and that this is my outlet for all the anger/hate/crying/frustration/feeling good/hopeful, etc thoughts and such.  It can be a lot to take in, I know.
You also know that around 20 years ago I was diagnosed with a mental illness and it kept getting renamed/re-diagnosed.  First it was schizo-effective, then schizophrenia, then bipolar, then major depression with psychosis, then well...we don't really know but take these drugs...and so on and so forth for 20 years.
So, after living in Kentucky and then coming home, I got a {bit} ill about the doctors just wanting to shove medications that never worked in me and I quit ALL of my doctors.  I found a new family doctor and a new psychologist...we talked, a lot.  We went over my history, a lot.  They both asked "have you ever seen a neurologist?" in the same week.  No, I had not.  So, off  I went to a neurologist. I saw her, after a few months of waiting to get in. (really, the wait was not as bad as it could have been) and my psychologist put me on a low dose of anti seizure meds while I waited to get in.
So, I go in, she has all my paperwork from my 2 new doctors (who have run every test under the sun) and she schedules a MRI of the brain and an EEG.  I go and have them done a few weeks later, in the morning and 2 hours later I get a phone call from her office.  Yeah, I'm having near constant seizures and please take X amount of medicine and come back in a month.
Yep....one test....that's all it took.  20 years of take these pills and we'll see what happens and all it took was a 2 hour test to show that...no, I don't have schizophrenia or bipolar, I have a seizure disorder.  I was happy.  I know that sounds crazy, but listen, I have been pumped full of drugs that did nothing but make me worse for a very long time.  Finally....an answer.  A result that could be seen...not guessing....not hey, let's see what this does.  No, it's there...it's real...it can be treated.  I was a little teary eyed.
I've learned a lot since then.  We are still trying to get the seizures under control, I can't drive until January as of right now.  I will get another EEG around September and maybe it will be clear and I can drive after Jan...if not...well, we'll work on that then.  Now, my family knows that when I suddenly act drunk or say nonsense things or act odd, I am having a seizure and that I won't remember it and that I am going to sleep for several hours after.  Then I will wake up and we will go on.  At least now they know why that happens.  It's a lot to take in, even if I am happy to finally know what's going on.  It's sometimes overwhelming, because before I had no idea what was going on around me, I had no awareness.  Now, I can see what is happening, even if I can't control it and that is both comforting and scary.
Sometimes I want to go back to the familiar world of gray and fog...just because it's familiar and I don't have to face reality.  Reality being I may not ever get to drive again...and that limits my freedom.  Most of the time I'm just finally happy to know that, while I have tons of issues that were CAUSED by psych docs who were supposed to be helping me, I am going to be ok in the end.  My doctors now are good, and are hesitant to give me any medication without the ok of my neurologist...so I see that as a big step in a good direction.  Sometimes part of me wants to sue the heck out of them...because I could and I have that right and now that I am finally on medications that are correct for my diagnosis, I can actually SEE that they did not even check to see if they were treating the right thing.  They assumed that my symptoms meant I had a mental illness...none of them listened to the key things that told them it was not mental, but neurological.  I am profoundly thankful for 2 doctors who did listen and caught the phrase, "I smell things that are not there.  I have olfactory hallucinations"...turns out this is NOT a symptom of mental illness, it is a marker of neurological disease.
All in all, I'm happy to know what is wrong with my brain, even if it scares the hell out of me most of the time.