June 12, 2014 I met with my neurologist that I went 5 hours to go see. (one way that is) lol. And I was not disappointed at all, so glad I went. She makes me feel like I am in good, educated hands.
She feels that the sjrogrens could be crossing over the central nervous system and or the brain for which is causing me the bad tremors and jerking that I have been getting. She listens, I love this about her. She asked me to send copies of my records of Dr. Hermitanos my rheumy to her, and then I have blood work this week, and a sleep deprived eeg Tues to be done in Green Bay. I was advised to get a neuro I can work with in between appointments with her, for which will be every six months, or more if needed. But this way the one I have here she can work through also. So I have to swallow my tongue and go back to the clinic, and get a neuro who wont mind working with Dr. Santillian. They all know her and like her so I hope this wont be hard to do. She also agreed not to switch back and forth between two neuros with all the issues I have. She could not believe they even suggested that for me. Also may want another spinal tap, for which I am holding my breath, I hate them, but if I have too I have too. She mentioned epilepsy, MS, etc. I should bring my tape recorder so I remember it all. I also told her about the tremors in my tongue, she did not look, I think she knows me enough by now to know when I tell her something, it is something that is not to be taken lightly, because I never go in complaining about this and that. She also told me I have not just small fiber neuropathy but also large fiber neuropathy for which I was told is very rare too. So I guess I am full of rare stuff, lol, I wish If I was so rare I was worth something, right, like an old book? lol. Oh well.
The tooth came out on Tuesday and still hurts, for which I don't think it should, but it does, not terrible, but just there.
Dr. Santillan is going to try for the IVIG I believe but she said it is getting harder and harder to get approval from insurance companies. So we will see what happens if it is meant to be it will be.
Like a friend of mind says who has HE it is in God's Hands.
Katie and Bill came to stay for a few days this past week which was such a great visit, Meg and Sean came down and Nick, I am so lucky to have such wonderful Children. I could not ask for anything else in life. So very lucky. Scott your included too as is Amy and my Payger, lol.
Happy Fathers Day to all who are fathers in anyway, stepfather, friends, mentor, foster how ever you father, have a great day.
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