366 Days of Gratefulness ~ Day 26

I left my appointment with Dr. Gaw today with mixed feelings.  I was relived, confused and uneasy with maybe a tinge of fear.  It wasn't nearly has upsetting as I had feared the appointment would be.  However, there was something that he said that has me disturbed.

I don't have to have the retuxin treatment yet.  We talked about it and agreed that if or when I come to the point of not being able to walk again, we would look at starting it then.  That was huge relief!  I told Mary on the way into his office I could throw up I was so nervous.  I am never nervous when I go.  Sometimes I dread what he might say or recommend, but never nervous.  That's how much I do not want to have to do that treatment.  I am grateful we do have something left to try just in case, but I am even more grateful we don't have to cross that bridge right now.

We talked about the med changes Dr. Peltier did the first of December, and how they just made the pain worse.  He agreed with Darryl that having me go back to what I was taking prior to the change was best.  He is not changing any of the meds I am currently taking, but he is adding one.  He is trying another med for the neuropathic pain.  It will take at least 2 weeks before I notice a difference.  Hopefully, it will be a difference for the better.

I had just let out a sigh of relief.  I wasn't going to have to start the retuxin, and we were in complete agreement about when that would even need to be considered.  He had a plan on what to try next regarding my pain and that did not include reducing the Lyrica.  And then I told him about the issues with my eye lately.  I expected to get the same response Dr. Peltier and even Dr. Huddleston, my eye doctor, gave me.  I thought he would just say it's just part of the disease.  Instead he has decided to do additional testing with my next blood draw, which happens to be tomorrow.  He checking for myasthenia gravis.  I had never heard of this, so I asked him to explain it to me.  Basically all I got was, you won't have to worry about it if you don't have it and don't go home and look it up.  He knows how paranoid I get, and he knew I'd come home and look it up.  He said it would take 2 weeks for the results to come back, and he was having the test run at the Mayo Clinic.

The Mayo Clinic.  My immediate thought was, if he's having it tested there, it must be serious.  I think I even said it out loud.    

So, what I heard him tell me was he is checking for a disease I had never heard of, he was having the test run at the Mayo Clinic and I was not supposed to look it up when I got home.

Seriously?!?!

Guess what I did within 5 minutes of getting home?  Yes, I looked it up.  I don't know if he thinks there is a possibility I have this disease instead of the CIDP or in addition to it.  I have many of the symptoms of this, but many of the symptoms are the same as those of CIDP.  It's going to be a long two weeks.  I'm just going to keep telling myself he's just being cautious.

I don't even know which diagnosis is worse.  Neither of them are appealing.

Then Sara came through the door holding this surprise for me ...

 

I have never been more grateful for a Sonic coke!  It's always a bright spot in any day.

I wonder if I can get her to walk through the door with a purse tomorrow.  I already have the one I want picked out.