Today I had a follow up appointment with my regular neurologist. She was thrilled and excited to hear that the specialists at the MDA clinic had been able to give me a working diagnosis that he is confident will be proven through subsequent testing. The focus today was the treatment of the symptoms rather than diagnosis. So we rearranged my medications that are used to treat the spasticity/dystonia in my legs to try to focus in on a combination that works. Really good news - the florinef seems to be working as my BP at the office today was 114/75!!!!! I NEVER see numbers that high!!! If we can get it a little higher and stable, then we may be able to try the Baclofen again - I got great results from the Baclofen but it caused a dangerous drop in blood pressure that led to a tour of the local emergency room when I hit numbers like 78/45 and was none to happy about it. The doctor noted that my endurance and strength have declined - for example I used to be able to stand with my braces or minor support (the counter) to complete a washing of dishes. Now after 2-3 minutes I have to sit back down in my wheelchair because otherwise my legs are going to go out from under me. I used to on a very good day be able to wheel about a mile, now I am lucky if I can wheel a block to the grocery store and library on a very good day. We are going to try to add in a low dose of an ADHD medication to treat the overwhelming fatigue because there are some days when even on a solid dose of narcolepsy medication I sleep until 3 or 4 in the afternoon and I am so exhausted that getting dressed is a massive victory. It is difficult to plan anything because I never know if it will be a day that I have energy or a day that I can barely get up out of bed to lay on the couch. Things that influence my energy include how I slept the night before, if I have any lingering or low level (let alone full out) infection, how the dysautonomia is behaving, and sometimes apparently the flight pattern of a butterfly in Brazil. :) I totally forgot to ask her what my PFT results were, but I am assuming if they were dangerously abnormal I would have been notified. I was also diagnosed as having myoclonus, and in a few weeks have to have an EEG done to make sure there are no signs of seizures and that it is originating in the muscles. On the same day I will be evaluated to determine if I would benefit from Botox injections in my legs, and then they will begin the process of convincing my insurance company that it is medically necessary - you know, that I am not treating wrinkles in my feet for cosmetic reasons. ;) The idea of being able to straighten my toes and get my foot flat again is an amazing concept that seems beyond belief.
Today started out far too early for my brain and body to keep up, but it was worth it because on the way to the appointment my father took me out to breakfast at a little hole-in-the-wall place that had awesome breakfast food. We shared one breakfast and I still could not finish my share!! Through all of this I have really been amazed and so appreciative of how my family has come together and been there for me. Never has my father or stepmother or brother complained about the appointments they have taken me to, about the waiting in waiting rooms, about the long drives (because the best neurologists are over an hour away), about the seemingly endless tests. My mother has been my emotional support, and she has never complained once when I woke her up in the middle of the night (nights are my toughest times) in tears of frustration or when I let it all out on her. Everyone has adapted to having to accommodate my wheelchair and my new limitations without making me feel like I am a burden or that I am making things more difficult for them. I am so blessed.