Sunday, September 2, 2012

Really? Possible Tumor? Can I Get Just One Break?

My great-grandma used to say that if it wasn't for the bad luck I have always had, I would have no luck at all.  Sure I have moments of good luck like winning contests but that in no way makes up for the crazy bad luck that sometimes creeps in.

I had a follow up appointment with the eye doctor on Friday.  This was probably the only medical appointment I have had in a decade that I actually felt okay for when I was going.  I was having an okay RA day, everything seemed to be working in my modified version of normal.  Looking back, it should have been my sign that something wrong is on the horizon but still I wouldn't have thought it would have been at my eye doctor. 

I had to visit him a few months ago because I went to get glasses and the doctor who did my vision test was concerned about the pressure in my eyes.  I saw my normal eye doctor and he found no high pressure.  But since I was in anyway, he wanted to check them in a month and have me do an updated visual field test. 

I have done the visual field test many, many times for him over the past 6 years so it was no big deal.  Between me having to reschedule from a  hospital stay and him going on vacation, that 4 weeks turned into 3 months and I got to see him on Friday.  Normally I am there forever but it's because he's behind then thinks of things to do that are longer than the appointment time he requested to have for me.  This time was a little different, I spent 3 hours with him.

I don't think I have ever seen him look so confused looking at something as he did looking at my test results from the computer. All he could say was "This looks very..." and silence.  I don't like silence in a room with a doctor.  I told him I do not approve of the next word being weird.  I don't like that word coming out of someone's mouth who wants me to use the word Dr. with their name.  The response I got was "but it does look weird.  Very, very weird. I haven't ever seen this."  I should have mentioned I don't like hearing those words either.

I had only been there 30 minutes and this visit was going downhill quickly.  In the next 2 1/2 hours, I learned that not only did my visual field test say I had blind spots that he didn't understand, my optic nerve had a lot of inflammation.  I have about 1 1/2 hours of being freaked out by my doctor plus another hour with one of his colleagues included in the freaking me out.  I should have known that it was a bad sign when he left the room and came back with an old bound book that looks like it belongs in a some book museum and he is scanning starting on page one. 

They both ran some more tests but the general thought is that I need a brain MRI MRV which of course they decide after everything is closed for the holiday weekend.  My other option given is to go to the emergency room and let them do it "if you are really concerned about it and want it done now."  I told them they were making me concerned by freaking out themselves.  They said they are very concerned but not so concerned that they are saying I have to go before they can schedule it for Tuesday and the decision was mine.  I am not showing any other symptoms so I should be okay until Tuesday.  What do you do with that?  Just tell me if I should go or not.  After some time discussing it, the consensus is that it could wait until Tuesday and I will repeat the tests from Friday on Wednesday and see them again.  Depending on those results, they may schedule a spinal tap.

So what do they think is wrong exactly?  The main suspects before additional testing is a tumor or pseudotumor.  They don't have an exact answer and I have actually had CTs & MRIs because of the losing feeling on my one side (which have all come back normal).  So the answer is they have no clue.  Because I don't have anything different than normal it's not an emergency so I am waiting out the long holiday weekend.

On another note, it is making me be a not good patient in another area.  Depending on the results, it may change my compliance with my no traveling alone restriction.  Because of the losing feeling, I 'm not supposed to travel alone mostly so that if it happens I have someone with me that can explain to people that I am fine just give me a few minutes.  That restriction is through at least January, which messes with my plans to go see PBR World Finals in Vegas. 

I have been debating going anyway because being able to walk around or even being somewhere for extended periods of time has been decreasing from my good friend Arthur (what I call my RA).  I was already thinking that this may be one of the last years I am to go and be able to enjoy most of being there (unless I get an RA miracle,which I always keep looking for).  I am on borrowed RA time from my diagnosis and progression speed to when they thought I would be in a wheelchair and limited. 

If this is anything that the eye doctor has on his short list of things it could be, there is a chance the large blind spots I have will get worse or I could lose vision.  I figure if there is something wrong this is God saying how many more signs do I need to give you to go do it already.  It may sound crazy but everyone has something that they really, really want to do.  Vegas for PBR Finals is one of my things.

We will see what news Wednesday brings.  I am not one for asking for prayers for myself but this time I am. It will either be a "okay this was a false alarm" day or a decision making, I am looking for money in my budget for Vegas day.  Hopefully I get a break on this one.

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