Great news to report!! Since being told I actually do not have Parkinson's Disease but that it is rather Functional Neurological Disorder I have been titrating my dopamine down from 18 tablets per day (3 tabs x 6 times per day) to 1 tax x 3 times per day to then get off the Neupro and Amantadine, if possible. I AM DOWN TO 4.5 TABS PER DAY (1.5 tabs x 3 times per day) AND FEELING AMAZING. I am back on my bike and have drop a good deal of the nastiest symptoms of being on that extreme dosing level, Got me thinking tonight.....Just how many tablets of Sinemet have I taken unnecessarily?
I found my first neurologist's records online purely by accident. They share the same patient record online vendor that my new CBT therapist does. What a surprise to learn the exact dates of the progression since he was the first neurologist I was finally referred to after my first symptom appeared in January 2009. My first visit date was December 8, 2011. Almost 3 years after my first symptom.
My first prescription for Sinimet was given to me on May 8, 2012 for 1/2 tablet x 3 times a day before meals, then titrate up to 1 tablet per day x 3 days after 7 days.
That was increased to 4 tablets per day on August 9, 2013.
Moved to Florida September 29, 2013 and began with new neuro immediately who diagnosed me with PD on November 15, 2013 from the results of a DATSCAN which today can prove whether or not the dopamine in my head has been progressively depleting or as my current neuro suspects may very well have stayed the same level. Will be interesting to find out!!! I don't have my prescription record handy for this writing from this doctor, but my pharmacy records will tell
For insurance reasons had to change to a new neuro who I saw for the first time on February 5, 2015. My visit record from that day shows I was on 1 tablet x 5 times per day.
Went up to 1 tablet x 6 times a day on December 15, 2015.
By November 2, 2016 I was raised to 1.5 tablets x 5 times a day then on October 3, 2017 raised again to 2 tablets x 5 times per day.
Changed neurologist when I moved. The initial visit was November 10, 2017. He raised me to 2.5 tablets x 6 times per day
By January 12 , 2018 I am taking 3 tabs at my 6am dose and 2 tabs for another 5 doses per day. He tried to raise me to 3 tabs x 6 times per day but writes that I reported being super hyper at that level. He backed me down to 3 tabs in the 6 am dose then 2.25 for the other 5.
My final report before Shands visit on June 20, 2018 was my last visit to that other neuro on March 23, 2018. I was taking 3 tabs at 6 am and 6 pm and 2 tabs at 10am, 10pm, and 2am. They write in their report, "Ms. Vullo was advised to take 3 tabs of Carbidopa/Levodopa for her 0600, 1000, 1300, and 1800 doses" and advised to skip the next two dose all together. That did not work so they prescribed me 3 tabs x 6 times per day and this time I stayed that way until June 20, 2018.
When I left Shands Hospital I immediately began to drop to 2.5 tabs x 5 times per day. Seven days later I dropped to 2 tabs x 5 times per day. 7 days later I am at 1.5 tabs only 3 times per day.
What does all of that add up to?
I HAVE SWALLOWED 13,474 TABLETS OF DOPAMINE AT A COST OF $17,381.46
I HAVE AFFIXED 1,795 PATCHES OF NEUPRO AT A COST OF $41,567.70
FOR A TOTAL COST OF $58,949.16
for Research Funding
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"Lisa Chalker is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."