Something Else?!? Really?

  Yesterday felt like a busy day. J was able to make it to my Neurologist appt (Dr. L-G) with me. I was prepared, so I thought. It was raining and dreary outside. I was sore and not feeling that great. We sat down in this big, but cluttered office. This was it, she held the answers!! I got out my purple steno pad for notes. I started off by telling her about not being able to get in, and she said Mr. Medical Secretary is being relocated in the office. She has been getting 2-3 complaints a day. I felt a twinge of justice. Hey, at least I can admit it. She seemed as prepared as I felt. After confirming the diagnosis of Atypical Trigeminal Neuralgia, we were assured that it was not a tumor or MS, positive news. We talked about the good ol' Nurse Practitioner. I think she was confident that I shouldn't  have been seeing her all along. Then we went into the real questions about the disease and my quality of life. Everything I read and she was telling me was 'I'm not sure'. I'm a planner, or was and so this is hard for me to swallow. I want to know exactly how long I will deal with the pain, when it will end, when it will return. None of this can be answered with a rare disease. As of yet I have had no need to jot down anything. I found myself starring off trying to make out her degrees on the wall behind her. Not done very well without my glasses. You know I did get the degree class last week from Dr. O.G. :) She starts throwing out numbers and percentage to us about patients. She claims to have 70 patients that she treats with TN. This number seems very high for later in my blog. Finally we start taking about medication. She doesn't understand why I am on the Anytriptline because that is the same as another medication I've been on. It will take one month to step down, but at least it's the 1st great thing I've heard since we've been there (I'm still happy secretly about the soon to be relocated employee). Then she lets me know that the Cymbalta is similar too. It would serve as 1 drug that would also double as another. The list is getting shorter, I'm happy. Oh crap, I haven't taken any notes, I hope J is remembering this. Even better yet Dr. L-G is writing it down. Checking things off of my mental list, complain about not getting in (check), ask to be taken off of some medication (check), now we need to discuss the swelling. She looks at it and I guess has been watching me the whole time. She suggested doing an EMG (?!?), and kept calling it a 'Chorea'. Mmmm Chinese food sounds good! Kidding. She's also called for 17 more things she wants to test for through a blood test. She said she thinks it is not related to the TN, but an Auto-Immune Disease. So  we walked out with another prescription but for the (in case) times when the pain gets unmanageable at home. Rather than make another ER visit I need to learn to manage the pain through medication or surgery, 9 or so months down the road. I will see her again in June after all of the tests are done to see what she thinks.
   Last night was the Webnair that John Hopkins was putting on. It was about surgery options that they perform. Each one of them had possible side effects that were worse that the one before. Each of them included permanent numbness of some kind, hearing loss, right foot something or other, stroke or even death. This is based off of 1200 surgeries you know! Then there was a Q and A session after in which 2 of my questions we answered. But someone actually asked if one day the surgery will be done by a robot? J and I were like WTF?! A robot? So I'm not sold at all on the surgery.
   This morning I went to see Dr. K.G. and shared everything with him. He took out his iPhone and said he would like to forward me some more stuff. I will go in for Vitamin D and Cholesterol rechecking and back in June.
   It's almost April but June is still 2 months away and in the meanwhile I feel lost.