Has anyone that was diagnosed with PD had the diagnosis upgraded to LBD (Lewy Body Disease)? If so, what led to the change in the Diagnosis?
Great question! I'm dealing with this very issue. After seeing my neurologist/movement disorder specialist, she ordered some neuropsychological testing... I have a 3.5 hour series of testing scheduled for next week. My primary care physician said he personally believes PD and LBD are basically the same illness. I had my doubts until a renown Neurologist at Mayo said the same thing. There's an excellent interview on YouTube called Lewy Body Dementia - A Conversation with Robert Bowles. I could absolutely relate, and perhaps you will too. A couple of cautions: If you're being treated with one of the agonist meds, they can cause a medication induced psychosis that looks and feels like LBD, especially if you're about 60 or older. Second, undoubtedly many patients have benefited from a DaTscan. I had one, only to be told I didn't have PD. Ultimately a very senior neurologist and Parkinson's Expert examined the report and said the Radiologist had interpreted the findings incorrectly, and that I have the disease. It has been a long and arduous journey. I wish you all the best!
I use THC in the evenings, when my left side is most painful and cramped. It relaxes my body lots and I use a dose which doesn't get me too high. It has helped me to get through a very long Canadian winter. I use edibles - gummies, and then I know exactly how much I am taking.
Hi @A MyParkinsonsTeam Member no mate, my first visit to the neurologist said I had the symptoms of PD and Lewy Body Demetia. Since then it has been confirmed only by the neurologist and now again was confirmed as getting worse. So as they have said we will monitor you and see how you go. I love their technical terms 😂
My husband has cognitive issues as well. Along with his normal regime of medications I give him CBD made from hemp and it helps control his down times and helps clear his head. I buy it on Amazon. It’s less expensive then in the stores and works.
There is a new drug that treats Parkinson Psychosis (PD induced LBD) called Nuplazid 34 mg a day. My neurologists diagnosed me with early stages of Lewy Body Disease I was having auditory, visual, and sensory hallucinations along with delusions, depression and anxiety. After six weeks the hallucinations subsided, delusions not so much. Depression is better anxiety still but no longer walking around the house waiting for a home invasion - It would be funny if it wasn't true.