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Tart Cherry Jam
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Default Nov 22, 2023 at 12:29 PM
 
Quote:
Originally Posted by Rose76 View Post
Thanks very much for your interesting discussion of Parkinsonism vs actual Parkinsons Disease. Coincidentally, it happens I just read 3 articles on DIP - drug induced Parkinsonism. They were articles written by researchers for professional consumption. I'm afraid I didn't find them as reassuring on several points as what I get out of what your neurologist seemed to be saying. I was very interested in whether or not drug induced Parkinsonism can always be reliably distinguished from so-called idiopathic Parkinsonism. Obviously, if the symptoms resolve upon discontinuation of a psych medication, then the connection between drug and Parkinsonism is not hard to infer. I was very surprised to read that there are any other ways to make the distinction. If I understood rightly, it seems they find actual differences in what symptoms present depending on the cause of the Parkinsons, with upper body involvement and symetricality of symptoms being different when you compare drug induced Parkinsons with idiopathic Parkinsons. However I was not getting the impression that they can be completely confident that what they are seeing is drug induced or not.

This kind of literature takes a lot of patience to read when you are not a medical researcher yourself. It's not that the stuff is so challenging intellectually. It's more that I find it tedious, like reading small-print legalese that we find in so many of the documents that we are asked to sign, like those online things that we typically scroll through. It's not stuff I can keep pouring over beyond the time it takes to skim and get what I think is the main jist. So I sure don't claim to have fully digested these articles. What I managed to get out of this reading was that there's a lot they are not sure of. But they do seem to know more than I thought was known.

I understand the difference between Parkinsonism and true Parkinsons Disease, which these articles call idiopathic Parkinsons. What I think I understood, however, was that "secondary Parkinsonism" - the drug induced kind - can be permanent and can be as diabling as idiopathic Parkinsons. In other words, one can be as bad as the other. That leads me to think that your neurologist may have been downplaying your risk of future neurologic disorder. He may believe all that he said, but I'ld take it with a large grain of salt.

This brings me to another issue. After many years of dealing with doctors, I've gotten the impression that clinical doctors (the ones who treat patients) tend to be a lot less rigorous in their thinking than doctors engaged in formal research. It's understandable. Clinicians are human and want to believe that they are doing good in this world. I believe that makes them invest too much faith in what they prescribe and under appreciate the risks to which they expose their patients. We patients have to decide if what benefits us in the short term is worth what cost there may be down the road in the long term. We also are human and our need to alleviate the suffering we experience here and now can tend to make us discount the future cost.
Rose, let me message him and ask him what he meant. I got the impression from him that this ability to distinguish between drug-induced Parkinsonism and idiopathic Parkinson's is new. Doctors did not have it in the past. I just did not engage in a discussion about it because in my case it is so clear: I stop the offending drug and the symptoms evaporate. But I will ask him. I am just wondering if what he had in mind is newer than what was described in the tedious literature you tried to read.

I also would like to let you know that it seems to be the case that taking large doses of vitamin B6 plus a regular dose of a B vitamin complex does away with mild Parkinsonism that I experienced on Latuda. I am now switching from Latuda to Vraylar (a starter dose) for completely different reasons, but just in case I will keep taking B vitamins. My psychiatrist researched the issue and recommended B6 to me. I take 350 mg.

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Bipolar I w/psychotic features
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Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
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Suspected narcolepsy

Treated with Ritalin 5mg
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Thanks for this!
Rose76