Well, my first visit with speech therapist was suppose to be today.  I guess yesterday's neuro visit took more out of me than I want to admit.  My fatigue today is hitting the roof.  So, I called and rescheduled therapy for another day.

I am just gonna copy and paste what I posted on the forum when I got home from neuro appointment.  Much easier than typing it twice.  

I think I am still in a serious state of shock.  For real.

First I saw a resident doc (he graduates tomorrow!).  He did a complete neuro exam on me.  He found NO REFLEXES, sensory and motor deficiencies (I am seeing 3 out of 5 on the notes).  He thoroughly looked over my time line and asked me questions about different parts of it.  He asked me about my life before all this.  Then he asked me what I thought was going on with me.  

I wasn't sure if I should tell him what I think, but I did.  He seemed to really pay attention.  He told me he thought it would be best for me to get a complete work up again....MRI and LP.

I also told him about my neuro telling me to pull up my boot straps and how that felt to me.  And, was the reason I hadn't been in for a year.

He told me my neuro would be in soon to talk to me and then he left.

My neuro came in and did neuro exam himself, too.  Then, he talked to me about my time with the Cleveland Clinic.  He told me that, right now, the only course of treatment he thinks would be beneficial would be high dose maintenance IV steroids and/or IV Ig.  He doesn't know if they would work and doesn't like to do the steroids like that due to the side effects and I agreed.  

I don't know anything about IV Ig.  He wanted to put me in the hospital for this now.  I asked him if I could wait so that I can find out more about it and he said sure.

We talked about UCLA.  He said due to my insurance, he is pretty confident my referral will be denied.  He has tried repeatedly to get patients in there and runs into brick walls every time.

He agrees that it is time for me to get a complete work up again.  He says we can do it, but wherever I end up going to they will want to do it themselves, too.  So why go through it twice?  He would like to wait and see if he can get referral through.

I said I could wait a little bit, but am not going to wait another year.  He said oh no.  It would be a month at the most.  Hell, what is a month compared to 6 years?  So, I agreed.

He restated that he doesn't believe UCLA is gonna pan out....that he wants to send me to the Mayo Clinic...in Minnesota.  He says he knows he can get me in there.  He says my case is baffling.

I was floored.

Did this neuro...this boot strap neuro, at that....just VALIDATE me??

Oh yeah, I did talk to him about the boot straps.  He backpedaled and said he does not see himself saying any such thing to anyone with genuine neuro condition.  I just kind of chuckled on the inside because the day he made the comment to me, I got the impression that I DIDN'T have anything really wrong with me.  Oh, well.  At least I called him on it and his resident caught wind of it too.  lol

So, it looks like I am going to the Mayo Clinic.  Wow.

Neuro did tell me that, if by chance, all referrals are a no go, then we will do all the testing here and go from there.

Okay, what is IV Ig??

Man, I am tired.  Oh yeah, I almost forgot.  He is also going to do some fanaggling to get me on the Provigil.  

I already got copy of my visit.  ;0)  And my time line got put in my file....heard him tell his nurse to make sure it got put in.

Still in shock....

Addi

My eyes are still feeling pressure.  Blurry vision still here.

My eyes did that weird thing again last night.  Lasted about 15-20 minutes.  No eye fluttering this time.  Blurry vision followed, with pressure type pain when moving my eyes.