The day before Thanksgiving I was lucky enough to have a double schedule of a standard neurology appointment to be followed by Botox injections from the Movement Disorder Specialist Neurologist. I arrived early for the first appointment, that with the general neurologist. I am not sure why I bothered, as she has yet to ever even manage to be on time let alone early in the year or more that I have been seeing her. So I waited, and waited, and waited. Finally, just when I was due upstairs in the Movement Disorder Specialist's office she walked into the room. Now her office knew I had an appointment with her colleague upstairs at a specific time and chose to keep me waiting downstairs and finish that appointment first. This comes into play later. Her big revelation is that I am far too complex to receive care under a general neurologist anymore, and she wants me to receive care for the dystonia from the Movement Disorder Specialist and for the Dysautonomia from another Specialist and to try to get to the Mayo Clinic if I ever get off of their waiting list for the waiting list. I waited over an hour to be told you have no idea what to do with me? Seriously? And you want my copay for this too?? She did order a bunch of labs because I have further loss of sensation and proprioception in my legs and feet which is strangely mirrored pretty closely in my arms and hands. By this point I am 40 minutes late for my appointment upstairs with the Movement Disorder Specialist for the Botox so my chart is shoved onto my lap and I am told to head directly upstairs, do not pass go, and do not dream of collecting any money.
I arrive in the office upstairs as fast as I could wheel, hand them my chart, and am asked very coldly if they were running late downstairs. Um, no, I decided to go out for drinks between appointments. Duh!! I was asked this same question no less than three times by every nurse, nurse practioner, and even the doctor. Apparently what they wanted me to do was leave downstairs, come upstairs at my appointment time, and then go back downstairs to be worked into the schedule. Great, I would have done that had anyone communicated that to me. So it was a rushed appointment, which I generally am not fond of when it involves long needles and my body. The Botox injections were less painful at the time of injection than last time, but more painful in terms of aching muscles later in the day and over the next couple days. I also got a weird headache right after the injections this time. I asked the Movement Disorder Specialist a question that the neurologist had fielded to him, and did not particularly like the answer I received. Lately I get what feels like the same increased tone in my legs in my lower to mid back. When this happens if I am standing or attempting to take steps with my walker it is very difficult if not virtually impossible for me to move my legs (I can move them a little better if lying down). He feels that this indicates that there is something going on involving my spinal cord, but since I have been imaged repeatedly, and my insurance charges a small fortune for any type of scan (Damn Green Cloak and Green Dagger) we will just watch it for now and see how it progresses. Oh fun!! And to test the progression of the sensory loss another round of EMG testing may be in my future. Santa, that was NOT on my Christmas list!!
Other than having to make an appointment for a check up with my internal medicine doctor, who is now holding my prescriptions hostage until I see him as it has been too long between appointments, I should have a decent stretch of doctor free time. Now if only my back would stop hurting, I might be able to see how much of a benefit I get from my new leg braces during peak Botox effectiveness!!