On Monday, we woke up bright and early at 6am. Then made the 1hr trek to the hospital. We checked in, but then there was a problem. Of course. Because we had been affiliated with another neurologist at that location, they were hesitant to switch me to the neurologist who has hospital privileges and has seen Allison’s condition before. But after some discussion, they called us back. The neurologist was thorough. He measured strength, as well as her reflexes. She has significant weakness in most limbs. As well as hyperreflexia. For example, when they tap Allison’s knee, it thrusts into extension. She also has significant dystonia and spastically. The neurologist looked over her previous EMG and MRI report. He explained that the L4 infiltration could be disease progression but it’s not what is causing the majority of the symptoms. The degenerative disc disease does not surprise anyone as Allison’s back is arched inwards. She also hangs on the y ligaments of her back while tall kneeling. As for the EMG, it showed fasicullations and active denervation. These signs further indicate upper motor neuron disease. Unfortunately the person who ran the EMG in may, only did two limbs. Which means Allison has to undergo a second one. They are uncomfortable and slightly painful. We also talked about the effects of Botox (very minimal). Lastly he mentioned DBS removal. We have to bring it up to the neurosurgeon on the 11th. There are a few reasons for removal. 1, the device is not in use. So just the fact that it is still in the brain, means an infection risk. 2, the connector between the neck and brain leads is right above the ear. Which is where glasses sits. This makes it painful to use most kinds of glasses. Thirdly, ever since Allison and the device placed, she had an increase in migraines. This has led to many emergency room trips and most of last July admitted to the hospital. Unfortunately the device was placed 6mm out of the target location. This means taking it out is so much riskier. 

Thank you for supporting us in this crazy journey!