New to site. RLS since childhood. Diagnosed 1993

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ViewsAskew
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

Bedbboc wrote:
Thu Jun 25, 2020 7:01 pm
View Askew
Please help. I have sent and saved to draft a PM to you twice, it was long and involved and now lost, is there a way to retrieve? If not how do I get a message to you.
There is a draft area - it could be in there. On the far left, there is a menu. Compose message is at the top. Manage drafts is underneath it. Click on that. The drafts might be in there.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by badnights »

I think I assumed that I gained weight because I got older but my appetite now is similar to my normal appetite before I began treatment thirty years ago.
There is so much reason for doctors to be very careful when they prescribe dopaminergic medications (as Ann said earlier, too!). You should not have suffered with that for 30 years; nor polar bear nor anyone. It is common knowledge now, so what's wrong with the databases that doctors use? Who is failing to update them? Forgive me, I'm about to rant.

Every patient - RLS/WED or Parkinsons - who is on a daily dose of a dopaminergic drug, any size dose, should be questioned by the prescribing physician every few months to check for development of obsessive behavior. WED/RLS patients should also be questioned to detect augmentation, and should have their iron status checked (including ferritin).

How long will it take for these recommendations to make it into our doctors' cheat sheets? How long before fresh-faced, eager-to-help young doctors won't automatically hand out prescriptions for ropinirole or pramipexole when patients reveal symptoms of WED/RLS?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Posts: 16074
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

badnights wrote:
Mon Jun 29, 2020 8:50 am
Forgive me, I'm about to rant.

Every patient - RLS/WED or Parkinsons - who is on a daily dose of a dopaminergic drug, any size dose, should be questioned by the prescribing physician every few months to check for development of obsessive behavior. WED/RLS patients should also be questioned to detect augmentation, and should have their iron status checked (including ferritin).

How long will it take for these recommendations to make it into our doctors' cheat sheets? How long before fresh-faced, eager-to-help young doctors won't automatically hand out prescriptions for ropinirole or pramipexole when patients reveal symptoms of WED/RLS?
I went to get my script the other day and a $55 addl script was there....for Narcan. Well, so glad that they are offering Narcan to patients who take opioids, but I wouldn't BE taking opioids, most likely, if I hadn't have taken the darn DAs! That was 15 years ago....and still, doctors prescribe these all the time.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16074
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

badnights wrote:
Mon Jun 29, 2020 8:50 am
Forgive me, I'm about to rant.

Every patient - RLS/WED or Parkinsons - who is on a daily dose of a dopaminergic drug, any size dose, should be questioned by the prescribing physician every few months to check for development of obsessive behavior. WED/RLS patients should also be questioned to detect augmentation, and should have their iron status checked (including ferritin).

How long will it take for these recommendations to make it into our doctors' cheat sheets? How long before fresh-faced, eager-to-help young doctors won't automatically hand out prescriptions for ropinirole or pramipexole when patients reveal symptoms of WED/RLS?
I went to get my script the other day and a $55 addl script was there....for Narcan. Well, so glad that they are offering Narcan to patients who take opioids, but I wouldn't BE taking opioids, most likely, if I hadn't have taken the darn DAs! That was 15 years ago....and still, doctors prescribe these all the time.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 5611
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to site. RLS since childhood. Diagnosed 1993

Post by badnights »

I went to get my script the other day and a $55 addl script was there....for Narcan.
Good lord, did you have to buy that too? I've never had any on hand, the risk of overdose seems really small.
I wouldn't BE taking opioids, most likely, if I hadn't have taken the darn DAs! That was 15 years ago....and still, doctors prescribe these all the time.
It's frustrating. Maddening.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16074
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

badnights wrote:
Tue Jun 30, 2020 7:31 am
I went to get my script the other day and a $55 addl script was there....for Narcan.
Good lord, did you have to buy that too? I've never had any on hand, the risk of overdose seems really small.
I wouldn't BE taking opioids, most likely, if I hadn't have taken the darn DAs! That was 15 years ago....and still, doctors prescribe these all the time.
It's frustrating. Maddening.
I told them I didn't want it. I came in a few days later for some other things (they only had a partial script of pramipexole the first visit), and this time they didn't ask me, they just rang it up. When it was like $80 or something, I said, why so much? This time I told I asked why it was there. No one knew. Must be some initiative with Dr. B's office to ensure he does all he can to prevent overdoses.

Like you, seems the risk is extremely low. I regularly take less than my prescribed dose, I am not naive to opioids, and even if I took an extra 5 mg by accident (and I carefully count them out each day in the AM) or a whole extra 10-15 mg, it would be less than I've taken when my symptoms were at their worst.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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