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Can Dextromethorphan be neuroprotective?

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Unread 02-12-2013, 11:29 PM   #11
soccertese
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lemon,
i tried DXM and got no symptom relief. i don't have tremor, maybe it will help your husband, maybe it won't. not sure why you feel compelled to post the papers supporting the possibility it might help, you don't have to convince me and its over the counter, it's a very low dose, just try it.

i have no idea why i don't have dyskinesias. i can't say that means i'm a slow progressor because when i'm "off" i just want to sit in a chair or lay down, i just happen to respond well to sinemet. when on, the avg. person wouldn't know i had pd. That's why i suggest you visit a pd support group and meet some advanced pd'ers rather than try to become an expert from browsing the internet.

i do know dyskinesias asre a result of having pd, not sinemet. dyskinesias are greatly reduced when the level of l-dopa is kept constant via a duodopa intestinal pump delivery and they actually increase the amount of l-dopa delivered with the pump. in fact, when oral l-dopa is administered after duodopa is stopped, it takes awhile for dyskinesias to start again, implying a physical change in neurons. dyskinesias can be created in advanced pd'ers from short lived agonists. so since most of us will need sinemet, your're delaying dyskinesias, not preventing them. and there are improved controlled release l-dopa formulations coming to market which will greatly reduce dyskinesias by themselves. so my layman's advice is not be so scared of sinemet. impax labs is hopefully going to get approval for such a drug shortly, hopefully insurance will pay for it.

i too was given a rx for requip when first diagnosed and told it was up to me if i wanted to use it. i didn't feel any pressure to fill the rx but was happy i had it so i wouldn't have to make another trip to the doctor. i waited 4-5 years before really taking meds full time, played around with mirapex which i couldn't tolerate so have seen on sinemet 5-6 years.

i suggest you get a used copy on ebay or amazon of "THE PARKINSON' DISEASE TREATMENT BOOK" by AHLSKOG, it's from a neuro that has a lot of pd experience.

l-dopa is a simple, natural occurring amino acid, it was a godsend when it was finally formulated with carbidopa to relieve pd, it is unfortunate that we have pd and we continue to progress but thank god we have sinemet. every central nervous system treatment, from autism to epilepsy to depression has side affects, the brain is a lot more complex than any other organ.

keep in mind that it's likely everyone active on this board has gone thru the same anxiety, literature searches, worries about drugs that you have posted. yet were're mostly all taking pharmaceutical drugs. even after years of trying everything mentioned on the internet, every supplement, every off label drug, were're taking sinemet and/or agonists, amantadine, azilect, COMT inhibitors, etc. so your're not the first person getting excited about DXM because they found some articles on the internet or read someone's anecdotes.

i apologize if i seem rude, but you seem to be lecturing me about sinemet and how your're sure DXM will relieve your husband's symptoms when he's tried neither. i don't get it.
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Unread 02-13-2013, 12:49 AM   #12
Lemonlime
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Soccertese - I am so sorry you feel that way! I would never try to lecture you or anyone. I truly apologize if I came cross that way! I really appreciated the help you offered me and took it to heart. I definitely do not feel as if I am an expert! I only posted those papers because they were from my research and posted it for anyone to read that may be interested. I apologize again if you felt it was directed to you. I can see how you would have taken it that way. I already had those links from previous research and just threw them in where applicable. I should have posted my thank you to you and then posted my links. I'm sorry if I came across overly excited!

Thank you for the information that dyskinesia is not always from Sinemet, but can be from PD. I did not know that! I thought it was a side effect of the meds and was merely pointing out that it was a fear. I too, am happy that we have Sinemet and see how it has helped so many people. I am not discounting Sinemet and know that it is in our near future. I am happy that we have that option. It's just that its new territory and we're scared! Thank you for easing the fear!

We were not given the option of whether to take Requip. The Neurologist basically said, take this, titrate up the dosage and I'll see you in 6 months. My point was that some doctors don't think about the patient or the long term and prescribe away. Yes, we always have a choice, but on diagnosis day, we were like putty in the hand. He didn't really need to take any meds, at the time, except maybe anxiety medicine. I wasn't discounting the med or anyone taking it. Sorry if it came across that way.

Please don't think I was trying to be anything but a newbie posting info that I thought was exciting research. I am truly sorry and will refrain from posting such info.
I appreciate your insight and hope you will accept my apology!
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Unread 02-13-2013, 08:06 AM   #13
soccertese
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Quote:
Originally Posted by Lemonlime View Post
Soccertese - I am so sorry you feel that way! I would never try to lecture you or anyone. I truly apologize if I came cross that way! I really appreciated the help you offered me and took it to heart. I definitely do not feel as if I am an expert! I only posted those papers because they were from my research and posted it for anyone to read that may be interested. I apologize again if you felt it was directed to you. I can see how you would have taken it that way. I already had those links from previous research and just threw them in where applicable. I should have posted my thank you to you and then posted my links. I'm sorry if I came across overly excited!

Thank you for the information that dyskinesia is not always from Sinemet, but can be from PD. I did not know that! I thought it was a side effect of the meds and was merely pointing out that it was a fear. I too, am happy that we have Sinemet and see how it has helped so many people. I am not discounting Sinemet and know that it is in our near future. I am happy that we have that option. It's just that its new territory and we're scared! Thank you for easing the fear!

We were not given the option of whether to take Requip. The Neurologist basically said, take this, titrate up the dosage and I'll see you in 6 months. My point was that some doctors don't think about the patient or the long term and prescribe away. Yes, we always have a choice, but on diagnosis day, we were like putty in the hand. He didn't really need to take any meds, at the time, except maybe anxiety medicine. I wasn't discounting the med or anyone taking it. Sorry if it came across that way.

Please don't think I was trying to be anything but a newbie posting info that I thought was exciting research. I am truly sorry and will refrain from posting such info.
I appreciate your insight and hope you will accept my apology!
just trying to put things in perspective. i'd get that book, i learned a lot and it provided a a platform for better evaluating what i find on the internet and read on message boards which can sometimes be misleading. you did all that internet searching and imho came away with an incomplete understanding of dyskinesias which spending $10 on a general book about pd would have clearly explained.
as far as your statements about sinemet sometimes causing dyskinesias, be aware that if you give sinemet to someone without pd, they don't get dyskinesias. my point is get what works the best for your husband and not worry so much about dyskinesias. from your description of your husband's experience with requip, sounds like sinemet might be his only choice. if he gets them, then you deal with it. from my understanding , sinemet doesn't change the brain and ultimately cause dyskinesias, it temporarily causes them and when it wears off it stops. I assume when michael j fox wakes up in the morning he doesn't have dyskinesias until he takes his sinemet. so taking sinemet doesn't prevent a future drug from working better without causing dyskinesias.

i'd spend more time researching what's going on in research, here's a podcast posted today on the MJFF
https://www.michaeljfox.org/files/mp3/mjf_todd_mark.mp3

Last edited by soccertese; 02-13-2013 at 08:31 AM.
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Unread 12-20-2013, 02:10 PM   #14
bluedahlia
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I found a product today called Koffex. It is purely dextromethorphan. Has anyone tried it?
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