Updated: Jan 25, 2021
Let's review shall we? Even though I had been seeing Dr. 3 for an entire year before she left the PI, my recovery was pretty slow. *I have learned that PD symptoms do not go away quickly like they do when I have a cold. Recovery comes with med consistency and lots of physical activity, as well as eating healthy. When the meds were not doing enough to help with the rigidity on my right side, Dr. 3 suggested Botox in both my lower right leg and right hand. The hope was that it would be easier for me to drive and to brake quickly, if needed. Botox injections definitely loosened up my foot, but now it felt like I had a fin on it. The injections had only made it feel flimsy and more detached (as a side note, until I finally found my present Dr and got off of almost all the meds, my right side felt completely detached from my body).
It is now January 2018. I have an appointment with a new Dr. I will be his first patient since coming onboard a couple of days prior.. The first time I met with him, I was very impressed by his knowledge and the amount of quality time he spent with me. He examined me thoroughly. He assessed my physical and cognitive abilities to make sure he was crystal clear re my strengths and weaknesses. Dr. 5 had asked me about my experience with Botox, and I told him it loosened up my foot, but way too much and now my foot was even weaker and dragging than it was before Botox!
Before our second visit, Dr. 5 had some time to go over my files and study my DatScan with a fine toothed comb. He told me that he had some potentially great news to share with me! Of course my comment right away was "You found a Cure"? "No" he said, but good news nonetheless. He cut right to the chase and told me that it was his strong professional opinion that I have been misdiagnosed. After hearing these words, I literally started arguing with him saying "It is a done deal. My DatScan shows that". Wait.......STOP the Press...... Did I just defend my symptoms in support of PD, even though every fiber of my being did not want it to be PD? Well...... There was only one way to find out. He sent me to have a PetScan, so he could get a much clearer view of my brain. After I had the PetScan done, I had a follow up appointment to discuss the results. I am sure you are wondering how a Dr. could have come in and completely change my course of action, when four other Dr.s had agreed it was PD. His reasons for thinking that the diagnosis was inaccurate were based on my DatScan and PetScan results and on the fact that my symptoms were not getting better no matter what medication I tried or how much I exercised.
New Diagnosis. Drum Roll Please..... Corticobasil Degeneration "CBD". CBD is a very rare type of Parkinsonism. It shares some of the same symptoms as PD, but usually only presents itself on one side of the body. Progressive Dementia is a huge concern with CBD. Currently, there are no treatments that help slow the progression. I was so shell shocked that I did not know what to say or think. At the time of re diagnosis, I had no idea that this condition was actually way worse than a diagnosis of PD. Had I known then what I now know about CBD, I would have melted.
I saw Dr. 5 once a month for the next 5 months. The only change he made to my medication protocol was to increase the dosage of Rytary slightly. During what would turn out to be my final appointment with him, he brought up a brand new medication that he felt would "solve" my physical problems. He wanted me to try GOCOVRI (Amantadine). He said that it would level me out and that I would feel so much better. At the end of my appointment time with him, he told me that he was leaving the PI, as he had accepted a position in Arizona to provide healthcare to underprivileged families living on a Reservation. He also noted that he lived in Arizona and flew in each week just to work at the PI. I actually cried as I left his office all the way until I got into my car. I thought I had finally found a Dr. who was really going to help me. Boy was I EVER wrong. Next up..... Dr. 6 and the Road to Nowhere....
This is how I walked out to my car after hearing another Dr. was leaving me