[wwally0]

Sinemet Failure - short video


http://youtu.be/M8DfsvBGNY4

if i decrease each dose if sinemet i am more dystonic in hands and feet. if i increase each dose if sinemet i am more dystonic in hands and feet.

Numbness and tingling in hands and feet 24/7 - any ideas?

[johnt]

I'm afraid I don't have any advice to give, but I just wanted to say that I think your video is a good idea, and that I can see this approach being used by others.

A collection of videos?

John

[wwally0]

Originally Posted by johnt

I'm afraid I don't have any advice to give, but I just wanted to say that I think your video is a good idea, and that I can see this approach being used by others.

A collection of videos?

John

Thanks John - typing so poor just now so easier for me. Cheers.

[soccertese]

just shooting in the dark here, certainly not an expert, but have you tried apomorphine injections? i've read there are side affects such as nausea so likely something neruos don't quickly try. i assume not a pleasant choice but might give you short improvement times.

interesting you don't get dyskinesias with that high dose of sinemet. same generic as always?

[wwally0]

Originally Posted by soccertese

just shooting in the dark here, certainly not an expert, but have you tried apomorphine injections? i've read there are side affects such as nausea so likely something neruos don't quickly try. i assume not a pleasant choice but might give you short improvement times.

interesting you don't get dyskinesias with that high dose of sinemet. same generic as always?

answer and questions. thanks

http://youtu.be/Awun5paa3bU

[soccertese]

looked at video #2 and here are my comments
1. didn't think l-dopa nor carbidopa was absorbed via the mouth, takes active transport in small intestine? trivial point. the liquid sinemet procedure from what i understand is more to accurately divide the tablet sinemet into smaller doses to be taken more frequently, the sinemet pill dissolves awfully quickly imho.

2. i think you need to establish if the l-dopa is actually getting into your brain, and once there is it getting converted to dopamine, i.e., do you have a gastric emptying problem which extends the time the sinemet stays in your stomach and as a result a lot of it gets converted to dopamine which doesn't pass the BBB? there are tests for gastric emptying, not sure how easy or reliable they are. and then once in the brain, do you mfg enough enzymes still to convert the l-dopa to dopamine?

3. the apomorphine i assume will get into your brain quickly since it is injected. if it helps, it will show you still have functional neurons that have dopamine receptors, which might imply the l-dopa either isn't getting into your brain and/or isn't getting converted to dopamine.

so maybe apomorphine might be used just as a quick diagnostic? if it helps, maybe you can decrease the sinemet and add mirapex or requip which doesn't get broken down in the peripheral tissues rapidly and don't have to be converted in the brain? they take a while to titrate up. again, not an expert you need to talk to neuro.

4. peripheral neuropathy not a clue, sorry.

finally, carbidopa doesn't pass thru the BBB, if it did, the l-dopa wouldn't convert to dopamine, i have read speculation that at high doses, greater than 200mg of carbidopa, it might pass thru the BBB. just wild speculation here, might not be a shred of truth there.

[wwally0]

Originally Posted by soccertese

looked at video #2 and here are my comments
1. didn't think l-dopa nor carbidopa was absorbed via the mouth, takes active transport in small intestine? trivial point. the liquid sinemet procedure from what i understand is more to accurately divide the tablet sinemet into smaller doses to be taken more frequently, the sinemet pill dissolves awfully quickly imho.

2. i think you need to establish if the l-dopa is actually getting into your brain, and once there is it getting converted to dopamine, i.e., do you have a gastric emptying problem which extends the time the sinemet stays in your stomach and as a result a lot of it gets converted to dopamine which doesn't pass the BBB? there are tests for gastric emptying, not sure how easy or reliable they are. and then once in the brain, do you mfg enough enzymes still to convert the l-dopa to dopamine?

3. the apomorphine i assume will get into your brain quickly since it is injected. if it helps, it will show you still have functional neurons that have dopamine receptors, which might imply the l-dopa either isn't getting into your brain and/or isn't getting converted to dopamine.

so maybe apomorphine might be used just as a quick diagnostic? if it helps, maybe you can decrease the sinemet and add mirapex or requip which doesn't get broken down in the peripheral tissues rapidly and don't have to be converted in the brain? they take a while to titrate up. again, not an expert you need to talk to neuro.

4. peripheral neuropathy not a clue, sorry.

finally, carbidopa doesn't pass thru the BBB, if it did, the l-dopa wouldn't convert to dopamine, i have read speculation that at high doses, greater than 200mg of carbidopa, it might pass thru the BBB. just wild speculation here, might not be a shred of truth there.

thanks++++
my conclusion
: http://youtu.be/P8HOTgV6mB0

[Bob Dawson]

Originally Posted by wwally0

thanks++++
my conclusion
: http://youtu.be/P8HOTgV6mB0

And that, was what we call in French: cinéma verité: cinema of truth, meaning, a very clear and present slice of real life, as it really is; real people, in real time, in real life, struggling against a real killer. The communication back and forth is moving and effective.
Thank you, wwally0.

[Bob Dawson]

It takes half a day to visit my Neuro - an hour to drive to the clinic, an hour to drive back, and I cannot drive, so I have to be driven; find a parking spot and pay for it, walk a long way from the car to the hospital; navigate the confusing and crowded corridors; wait an hour or two in the over-crowded waiting room; finally get called in, getting 10 minutes to 15 minutes with the neuro (his quota requires seeing 4 PWP per hour); A Parkie can get to see him one every six months (a half hour per year) if you are stable; I get to see him every 4 months (an hour per year) because I am falling apart; that is my total contact with the medical world; I have no family doctor, no nurse, no Parkie group; just 15 minutes with the neuro every 4 to 6 months
It is what we refer to in Canada as "universal health care - no time for you, we have to take care of the universe first."
Seeing what wwally0 has done here inspires me to try it out on my neuro - instead of spending half a day to go see him, I could send him a video as wwally0 did here; it would save everybody time and effort; I would only go to the city if they wanted to give me some tests, but that is very rare. Isn't it time the medical world discovered digital technology? Is it not a fact that you understand wwally0's condition a lot better in the video than if he had typed and e-mailed it? And does this not help lower medical costs? At least it reduces the crowding in the waiting rooms.
YouTube is quite the subversive application of open communication, and it is free, which is about as cheap as things get. Cinéma verité was thought to be a lost art; here it returns to assist the medical arts.

[rsprin2]

Excellent idea, I would be happy to pay the same amount for office visit or even more for this kind of appointment. I can relate to your problems with getting to appointments and the frustration over the amount of effort for a 10 to 15 minute evaluation. As far as for the original post from wwalo I thank you for sharing your story and while I have no helpful advice I hope you find the answers your seeking