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
This is getting better and better. Found a US Based Association for doctors and students. The International Association of Functional Neurology and Rehabilitation (IAFNR) at https://iafnr.org/
IAFNR was formed in 2010 to promote, protect and advance interdisciplinary scientific and clinical Functional Neurology and Rehabilitation Sciences at the national and international levels.
We remain focused on practical applications that will improve the health of suffering people, prevent illness and lower healthcare costs.
The site features research, conferences, courses, webinars and an online doctor referral service.
Their inaugural e-newsletter was published in April 2018. You can find it here: https://iafnr.org/wp-content/uploads/2018/04/IAFNR-April-2018-reduced-file-size.pdf
International Association of Functional Neurology and Rehabilitation
2487 S. Gilbert Rd #106-116
Gilbert, AZ 85295
Found a very helpful soft cover textbook for doctors on Functional Neurology with chapters that include an explanation of its origins in the body, how to diagnosis it, and how to treat it. The treats are chiropractic based natural healing. What a great alternative to handfuls of medication. My copy arrived last night and I am voraciously reading it to bring myself up to speed.
Receptor Based Solutions; Functional Neurology Every Doctor Should Know
by Michael D. Allen (Author)
At the time of this writing there are 6 left in stock. You can find it on Amazon:
Here is the author's website: http://receptorbasedsolutions.com/
The author's Twitter site: https://twitter.com/blackbeltinak
In my almost 10 year journey since my first symptom sent me to the PCP in January 2009, my rollercoaster odyssey for the next five years to find a diagnosis, and then finally being told I have Early Onset Parkinsons Disease in November 2013, I never heard or came across the term "FUNCTIONAL NEUROLOGICAL DISORDER".
Luckily for me, the introduction came just in time. I learned about FND at the University of Florida Shands Hospital Movement Disorder and Neurorestorative Dept during an evaluation for Deep Brain Stimulation Surgery to implant a device that as a PD patient would help to stop my tremors and whole body Dystonia. I went in expecting a date for surgery; and left there with a change in my life trajectory. WOW!!! Keep reading......
All it took my new neurologist to determine I most likely don't have PD (or if I do its a mild Stage 1) was to read the results of the one hour of PT and one hour of OT plus he scheduled me for BEFORE my eval (in conjunction with his own manual test results). I had not had either therapy since 2014 and that was the LSVT BIG program I took for balance. These two appointments prior to the doctor seeing me were KEY!!! I had three other surgical evals prior to this one at two other major hospitals and neither began with PT or OT. Brilliant move!!!!
I arrive at Shands off my medications for almost 24 hours. I was in full body Dystonia. Stiff as a board and unable to walk. I went to my PT appointment in a wheelchair. After my PT stretched all of my limb muscles and started me on warm up exercises, she proceeded to give me tests (which I remember from the BIG evaluation). I was having so much fun, my body returned to supple and flexible. At the end of the hour, I threw my heavy overnight bag over my shoulder and promptly walked into the waiting room at a normal walking pace. My muscles were now awake.
My next appointment was OT. A brilliant OT measured my fine motor skills and promptly determined there was something else going on here. She asked me if I ever experienced trauma. So I proceeded to list the ones I could remember - after 30 minutes she had to stop me and asked, "You ARE seeing someone to talk about all of this, aren't you?" Of course, I said, "No, why?" I didn't notice until hindsight that while I was discussing them, my body became completely relaxed and all tremor was gone for good..... for the remainder of that day. I didn't have any idea in that moment that my diagnosis was about to change.
My next and final stop was my to meet my new neurologist who put me through the test paces (I am oh so used to) and then I sat down to schedule a date for my surgery and instead was told that my brain might have trouble initially understanding this, but he suspects I do not have PD at all. He thinks I have FUNCTIONAL NEUROLOGICAL DISORDER. In panic, I said, "What is that????" (Praying it wasn't worse than what I have now. Wait, I have something else? How could this be?) My ears heard him and my brain sent out an SOS. Stop the presses. WHAT??? After an explanation from my doctor (quickly) that FND is treatable and most likely for me curable, I burst out in a guttural cry. The relief was palpable. We proceeded to finish speaking with me wailing because I couldn't stop my reaction. He went on to explain FND, which I researched when I got home. His treatment schedule for me.......Titrate OFF of my meds on a slow schedule. Get my Carbidopa/Levodopa down from 18 per day to 3 then off the other meds, if I can. Three PT and three OT appointments per week and talk therapy twice a week. It can take between 4-12 months depending on the patient. WOW!! Are you kidding me?
Fast forward 11 days to today. I have titrated down to 9 dopamine tabs per day (cut in half) and I have not felt this well in a really long time. I woke up this morning with no sign of tremor even though my last dose was 7 hours ago. I SLEEP!!! Last night I went to bed at 10:30pm and did not wake up until 5:30 am when my dog signaled he needed to be let out. I also took two naps yesterday and one already today. These are the welcome first steps to resolving my dopamine induced SLEEP DEPRIVATION. My mind is surprisingly and obviously to everyone around me - very clear. I am back to making intelligent decisions in a timely manner. I am much less "reactive" to what I am being told. I automatically returned to listening to what someone says and then responding. I am not an emotional mess. In fact, I have my fighting spirit back. I can see the masking leaving my face. I can easily go 6 hours between doses; prior to this I couldn't even make it to 4 (I was "on" for only maybe 2 hours at time with high velocity tremor in between that was really affecting my life every day). I am making myself good meals to eat; not grabbing something quickly or not eating at all because I couldn't make a decision. I feel more each day like the "normal" person I used to be. My brain is back!!!!!
My body is ready to come back, as well. I started doing push ups (didn't have strength to hold one 10 days ago) and sit ups and stretches. Getting prepared for much needed PT and OT. I always had a firm, slim body. All the weakness and lack of motivation to exercise has made me loose and jiggly. Luckily that's not going to be too hard to fix. I just need to put forth the effort. Once my muscles are tight once again, it should help stop the tremor (which should also subside as soon as I work out the PTSD from a life filled with trauma). I am aware that I carry lasting memories that I recall almost every day. Some much stronger than others but I would easily tell you I suffer from PTSD - there is no doubt. FND has to do with a disconnect in your nervous system. If you know me, this would have been a "no-brainer" to diagnose if you were aware of FND.
Here are some very vital resources I am learning from and you can too. I will be back with updates and more information. We need to spread the word: FND AND PD MIRROR EACH OTHER SO CLOSELY THAT THEY CAN EASILY BE DIAGNOSED IN PLACE OF EACH OTHER. There are specific things that belong to each, but you have to look closely. PD lives in the motor region in your brain; FND lives in the autonomic region (reactionary). If you don't have PD, like they suspect I do not, then - like me - you can come "in" and "out" of PD symptoms almost at will. I do not have consistent PD. It can be almost undetectable and catatonic - in a large swing from nothing to severe. I find I can do that based upon my emotions. If I am calm and stress free OR if my thoughts are re-directed (like when I am in public), the PD symptoms are the least noticeable. My tremors are high when I am the most stressed or tired or receive information that I don't want to hear or am in a situation I don't want to be. Any time my brain goes on FIGHT OR FLIGHT, my PD-like symptoms are at their worst. My new doctor promptly annouced. "If you really had PD, it would NOT be possible to do that." What a smart cookie!!! I encourage you to do some research and ask your doctor if this could be a possibility for you.
RESOURCES I HAVE FOUND: (Note: I am not a medical professional so cannot make comment on or warranty or recommend anything written on any of these sites. I just found them myself.)
Let me know if you come across good resources to share. This is exciting news for me and I hope for someone you love. In some cases, there is an alternative to PD. My intuition tells me this doctor nailed it on the head (no pun intended) and lucky found me out before surgery. I am forever grateful.
Great news to share!!! My doctor at University of Florida Shands Hospital Movement Disorder and Neurorestoration Center is titrating me down from 18 dopamine pills a day to 1 tab 3x per day. I was taking 3 tabs 6x day. I'm down to 2 per dose but only needed 3 doses yesterday so down from 18 pills to 6-8 per day.
RESULTS SO FAR: My internal tremor is GONE. Overall my stability is instantly noticeable. No shaking when I walk or stand. Physically and mentally stable. I am aware of everything again. My thoughts are clear so I'm flooding with all the things I need to do or haven't done in a while, like communicating with people. I didn't realize how much 18 tabs suppressed my fluid thought process. Instead of making me tired, dopamine sped everything up every day making me race through every action and did not allow me to go to sleep or stay asleep.
Yesterday I sat down & sat still (YES) and wrote a to-do list in perfect penmanship. Washed my own car. Did a complete grocery shopping trip. Here is the ultimate - - - I took 2 two hour naps and last night slept through the night for 8 hours. SLEEP!!!!! WELCOME BACK!!!!! I have not slept through the night in about 2 years. This morning I woke up refreshed with no tremors. Up until 6/20/18 I lived 3,443 days that ended as Stage 4 Early Onset PD and was being evaluated for DBS. Instead I got the shock of my life when I was advised, "In my opinion you do not have have PD. I believe you have FND (Functional Neurological Disorder)". Stunned silence. A bombshell out of left field. I was expecting a date for my surgery. Instead I thought I just heard what you have is treatable & curable. I burst out crying. And now that I've done the research, I am positive this doctor is spot on target.
Watch this and be amazed as I improve and return to my former self. Here are two websites to investigate then check with your doctor about the possibility that you might have FUNCTIONAL NEUROLOGICAL DISORDER which presents identically to PD. The difference PD lives in the motor region in your brain. Find more information at these two websites:
Titrating off high levels of dopamine and reacting extraordinarily well is the first sign we may be on the right track.
God bless you with good health..............
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"Lisa Vullo 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."