DR. appt. update
DR. appt. update
Well here goes, the Dr. whom I paid $200 to see and whose name I got off this board is a goof and her name should be removed in my opinion.
Some of you may know my story so I won't make you relive it.
When I told her about the Norco that helped me after my surgery in 2007 she said that opiates are very dangerous and should not be used. She assumed I was still on them I had to remind her 3 times it was for a week or so while I was recovering.
I gave her the Mayo. Clinic Report and she did make a copy of the portion that spoke of refractory RLS (I was happy she didn't rip it up like my other DR.)
She wants me to stop taking the clonazepam because I don't need it being I am on Requip. The 4mg. of requip is way to high so I need to start tapering down. Her method of tapering down is (i have 3 left) so do what I can with them then no more because I've been on them to long. She wants me to have a cbc, check my liver and kidney function because of the high dose of meds."Popping that many pills is not good for you" And the Norco could destroy your liver : hello have not had it in over a year. Also she wants me to have a EKG and any x-rays I have had previously and a MRI because she said I had authritis in my shoulder because it kind of cracked when I lifted my arm. I tried to remind her I was here for the RLS/Sleep problems.
So she took out her script pad (woo-hoo) she's actually going to give me something to help me sleep no she gave me a RX for 6oomg. of Motrin and 100mg. of Ranitidine. When I asked why she said the Rant. would help my stomach because of all the meds. I was on, and the motrin is good for my heart. As she was leaving the room I continued to talk..hey $200 and 3 hrs. sleep I wanted to be heard and understood, as I was talking she said I was hyper and that could be my sleep issue. Friends I am far from hyper. To damn tired to be.
So much for me getting any relief. I am done.
Some of you may know my story so I won't make you relive it.
When I told her about the Norco that helped me after my surgery in 2007 she said that opiates are very dangerous and should not be used. She assumed I was still on them I had to remind her 3 times it was for a week or so while I was recovering.
I gave her the Mayo. Clinic Report and she did make a copy of the portion that spoke of refractory RLS (I was happy she didn't rip it up like my other DR.)
She wants me to stop taking the clonazepam because I don't need it being I am on Requip. The 4mg. of requip is way to high so I need to start tapering down. Her method of tapering down is (i have 3 left) so do what I can with them then no more because I've been on them to long. She wants me to have a cbc, check my liver and kidney function because of the high dose of meds."Popping that many pills is not good for you" And the Norco could destroy your liver : hello have not had it in over a year. Also she wants me to have a EKG and any x-rays I have had previously and a MRI because she said I had authritis in my shoulder because it kind of cracked when I lifted my arm. I tried to remind her I was here for the RLS/Sleep problems.
So she took out her script pad (woo-hoo) she's actually going to give me something to help me sleep no she gave me a RX for 6oomg. of Motrin and 100mg. of Ranitidine. When I asked why she said the Rant. would help my stomach because of all the meds. I was on, and the motrin is good for my heart. As she was leaving the room I continued to talk..hey $200 and 3 hrs. sleep I wanted to be heard and understood, as I was talking she said I was hyper and that could be my sleep issue. Friends I am far from hyper. To damn tired to be.
So much for me getting any relief. I am done.
Last edited by keana on Wed Feb 18, 2009 9:18 am, edited 2 times in total.
Keana
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Some doc.... I don't think.
As for a prescription for the ranitidine, here in UK we can buy that OTC from our local chain supermarket at .75 dosage x 12 pills for around £1.50, thats probably $2.
Lady doc needs educated. Can they just put down that they are an 'expert' in rls, regardless of their experience and training in the subject. Note- I did not put interest in the subject cos she doesn't appear to have much interest.
Keana, you must have felt so frustrated....
A personally recommended doc is what you need.
As for a prescription for the ranitidine, here in UK we can buy that OTC from our local chain supermarket at .75 dosage x 12 pills for around £1.50, thats probably $2.
Lady doc needs educated. Can they just put down that they are an 'expert' in rls, regardless of their experience and training in the subject. Note- I did not put interest in the subject cos she doesn't appear to have much interest.
Keana, you must have felt so frustrated....
A personally recommended doc is what you need.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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Hi Keana. How frustrating! As for what it takes for a doctor to be on the list, they don't have to prove anything, obviously. It would be helpful if you contact the staff at the RLS foundation and ask them to remove this doctor from the list, though, and explain why.
In the meantime, I've emailed you some information on clinics that will prescribe meds to you until you can find a competent doctor. I'm hoping someone from Illinois will chime in with the name of a doctor who could be helpful. Otherwise, there's always flying out to John's Hopkins to see one of their RLS experts, or to LA to see Dr. Buchfuhrer.
In the meantime, I've emailed you some information on clinics that will prescribe meds to you until you can find a competent doctor. I'm hoping someone from Illinois will chime in with the name of a doctor who could be helpful. Otherwise, there's always flying out to John's Hopkins to see one of their RLS experts, or to LA to see Dr. Buchfuhrer.
Susan
- woodsie357
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well as I was reading your post I wanted to post my own 4 letter word reply to this doctor you saw. Several 4 letter words in fact. But I'll be nice and won't start a swear fest.
that's horrible. it sounds like she gave you rantidine with out any reason to. And isn't motrin going to bother your liver too? and have possible bleeding problems if used for a long period of time?
I was also asked by the doctor if I smoked or had ever smoked and as you said you know that's bad for RLS. she just really didn't seem to take you serious. I'm so sorry.
Maybe call in a few days and ask if she's read the mayo info and if she has is she willing to revisit your problem... say you tried the motrin and if it worked or not, my guess is that it won't but I'm no doctor.
also wont you have increased RLS with lowering the requip?
Ill say a prayer for you.
that's horrible. it sounds like she gave you rantidine with out any reason to. And isn't motrin going to bother your liver too? and have possible bleeding problems if used for a long period of time?
I was also asked by the doctor if I smoked or had ever smoked and as you said you know that's bad for RLS. she just really didn't seem to take you serious. I'm so sorry.
Maybe call in a few days and ask if she's read the mayo info and if she has is she willing to revisit your problem... say you tried the motrin and if it worked or not, my guess is that it won't but I'm no doctor.
also wont you have increased RLS with lowering the requip?
Ill say a prayer for you.
Someone cares about your sleepless nights
k, Not to preach but your points 1 & 2 are worth strong consideration. Ok, so I lied and preached. Other than that, what a sorry and sad appointment you had. But, don't give up. Many here have gone thru similar situations. I am not from Illinois and cannot offer much except hope. Persevere. You will find the right doc who will listen and work with you. Best wishes and luck. M.
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Ah, Keana, that just isn't right.
And, on so many levels.
It may not be high on your list, but please consider writing a letter to the Foundation about this. Tell them what she did. Her name should NOT be there.
I wish I had some way to make this better. I don't. I only know that this is horrible that we continue to have to go through this, and I don't see it changing any time soon. So many people need to be educated and there isn't enough money to do that.
One option I just thought of is to complain to your HMO. A formal complaint. You've gone to the doctors that are there and they REFUSED to treat you. The HMO has an obligation to find a doctor who will. It would be a battle and you might not want that; I totally get that. It is an option if you are angry enough and have the energy to pursue it.
And, on so many levels.
It may not be high on your list, but please consider writing a letter to the Foundation about this. Tell them what she did. Her name should NOT be there.
I wish I had some way to make this better. I don't. I only know that this is horrible that we continue to have to go through this, and I don't see it changing any time soon. So many people need to be educated and there isn't enough money to do that.
One option I just thought of is to complain to your HMO. A formal complaint. You've gone to the doctors that are there and they REFUSED to treat you. The HMO has an obligation to find a doctor who will. It would be a battle and you might not want that; I totally get that. It is an option if you are angry enough and have the energy to pursue it.
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.
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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I smoked for 35 yrs and the last few yrs I smoked 3 pkgs a day.. I now have been off cigs, for 9 yrs this Sept. and I have noticed NO difference in my rls, so I think it would be to your advantage to stop smoking, trust me, you dont want the health issued I have due to smoking all those yrs, but I honestly do not think its going to help your rls, just my opinion..
Again, please try to stop smoking. That is all I am going to say.*L* we reformed smokers can really get on a soap box most times.. but I will tell you this and It just might help. I never knew how bad I smelled until I quit smoking!! After being in hospital for 9 days, and no cigs, I walked into my house and could not believe how awful it smelled!!! So every time you light up, remember anyone who comes close to you during the day will smell how bad your stink..*L* funny, but not funny!! And it does stink to people who do not smoke.. is an awful smell to me now..
Again, please try to stop smoking. That is all I am going to say.*L* we reformed smokers can really get on a soap box most times.. but I will tell you this and It just might help. I never knew how bad I smelled until I quit smoking!! After being in hospital for 9 days, and no cigs, I walked into my house and could not believe how awful it smelled!!! So every time you light up, remember anyone who comes close to you during the day will smell how bad your stink..*L* funny, but not funny!! And it does stink to people who do not smoke.. is an awful smell to me now..
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Crud!!!! Are you going to do anything she says? Just worried about stopping clonazapam abruptly....can be bad for some of us and we have to stop very slowly.
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.
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.
clonazapam
I have no choice in stopping she would not give me a script. So I've been crying and of course pacing. The requip is gone in 3 days so that will be it for me I cannot take this w/o meds. I've been on meds. for so long now I have to go cold turkey....I cannot do it.
Keana
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Keana, that is AWFUL. That is malpractice, in my opinion. OK, maybe not, but unless I'm missing something here, that seems negligent in my opinion.
You really ought not stop a benzo cold turkey; no doctor recommends that. Period. I would call her first thing in the morning and tell her nurse that you have looked at Klonpin's website and it recommends a tapering process. (Go look to be sure, but I am positive it must.) There are many risks associated with cold turkey withdrawal of benzos that have been taken for more than a few weeks.
She should absolutely know that.
I went to Roche's site (the make of Klonopin) and found this PDF. Please read what it says about abrupt withdrawal. And then call the nurse and tell her. The doctor MUST give you enough to plan for the taper of the drug. Not doing so would be putting you at risk. She might not agree with what you were taking, but she is required to do no harm. This is doing you harm.
Next, you have to see someone right away. I know the one doctor in your HMO was not appropriate at all. What other options do you have for a primary care doctor on your insurance plan? You probably cannot switch at short notice.
If you cannot find someone to see and she will not assist you, I'd go to the emergency room. Take a list of meds you can't take or they might screw up. Even if you are not one of the sensitive people who has difficulty stopping a benzo, abruptly stopping is a different issue. It is possible you will experience nausea, chills, etc. At that point, the emergency room is your only option. Again, if you can, take someone with you who can advocate for you.
You really ought not stop a benzo cold turkey; no doctor recommends that. Period. I would call her first thing in the morning and tell her nurse that you have looked at Klonpin's website and it recommends a tapering process. (Go look to be sure, but I am positive it must.) There are many risks associated with cold turkey withdrawal of benzos that have been taken for more than a few weeks.
She should absolutely know that.
I went to Roche's site (the make of Klonopin) and found this PDF. Please read what it says about abrupt withdrawal. And then call the nurse and tell her. The doctor MUST give you enough to plan for the taper of the drug. Not doing so would be putting you at risk. She might not agree with what you were taking, but she is required to do no harm. This is doing you harm.
Next, you have to see someone right away. I know the one doctor in your HMO was not appropriate at all. What other options do you have for a primary care doctor on your insurance plan? You probably cannot switch at short notice.
If you cannot find someone to see and she will not assist you, I'd go to the emergency room. Take a list of meds you can't take or they might screw up. Even if you are not one of the sensitive people who has difficulty stopping a benzo, abruptly stopping is a different issue. It is possible you will experience nausea, chills, etc. At that point, the emergency room is your only option. Again, if you can, take someone with you who can advocate for you.
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.
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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I agree with Ann. This doctor is guilty of malpractice on a couple fronts. First of all, clonazepam should not be stopped abruptly, especially at such a high dose. It should be tapered, or you can have severe withdrawal. Second, stopping the Requip abruptly like that without something to cover the increased RLS is akin to torture.
You're likely going to need to go to an urgent care or an emergency room. Be sure and tell your family what's going on so that someone can be there and advocate for you. And once you get some treatment again, you need to sit down and write a letter to the state medical licensing board. There is just no excuse for your doctors' unwillingness to treat you, and even less excuse for them taking you off your meds and not giving you alternatives!
You're likely going to need to go to an urgent care or an emergency room. Be sure and tell your family what's going on so that someone can be there and advocate for you. And once you get some treatment again, you need to sit down and write a letter to the state medical licensing board. There is just no excuse for your doctors' unwillingness to treat you, and even less excuse for them taking you off your meds and not giving you alternatives!
Susan
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agreed ladies, and gentlemen,...
This is going to get worse before it gets better. Dig your heals in and fight. Once you run out of requip you're going to be in a world of hurt, an ER type setting might be the best, if you can get a baby sitter. you're legs are going to be freaking out once you run out of Requip. So might as well be in a place at a time where they are going to be seen driving you nuts.
I don't think your doctor got a clear view of the meds you've been on or when you were on them. Did you take a list with you?. Here is an example of one.
History of Medications used for my RLS
Updated 02-16-2009
Medication Dosage Effectiveness Side-Effects
Benedryl 50mg to 100mg Very poor Intensified the torture
Discontinued greatly
Tylenol PM adult dosage Very poor Intensified the torture
Discontinued greatly
Amnitriptaline 50mg (I think) Poor to fair Mild help. Weight gain!
Discontinued Moodiness
Trazadone 150mg Poor No effect at all.
Discontinued
Requip 2 months Very poor I felt it made it worse.
Discontinued
Hydrocodone Discontinued Poor I was able to lay awake in bed longer
Neurontin 900mg Poor to fair Increased sleep from max
Discontinued sleep from 2hrs to 4hrs
Severe weight gain.
Alprazalam 1mg Poor No effect on sleep
Discontinued Dizziness
Klonipin Discontinue Very poor Mind went 100 miles
an hour totally restless
Ultram 50mg Poor to fair Kept me from committing Discontinued suicide Counter productive
in terms of RLS.
Clonidine hcl 0.1mg Poor to fair Vivid Nightmares,
Discontinued
Oxycodone-APAP 5-325 Poor No increase in amount of Discontinued sleep. “Bug eyed” awake.
Ferrous Sulfate 325mg none noticed so far None
Rozerem 8mg Discontinued Very Poor No difference.
Mirapex Discontinued Poor to Fair I felt worse after running out
but I didn't feel it helped
while taking it, that I
remember
Methadone 2.5mg started 2/11/09 Unknown at this time None noticed.
Just started.
This is one of my lists, and it's not pretty in this chat but its been a great help for me to take it into my doctors, they know every thing I've tried etc.
This is going to get worse before it gets better. Dig your heals in and fight. Once you run out of requip you're going to be in a world of hurt, an ER type setting might be the best, if you can get a baby sitter. you're legs are going to be freaking out once you run out of Requip. So might as well be in a place at a time where they are going to be seen driving you nuts.
I don't think your doctor got a clear view of the meds you've been on or when you were on them. Did you take a list with you?. Here is an example of one.
History of Medications used for my RLS
Updated 02-16-2009
Medication Dosage Effectiveness Side-Effects
Benedryl 50mg to 100mg Very poor Intensified the torture
Discontinued greatly
Tylenol PM adult dosage Very poor Intensified the torture
Discontinued greatly
Amnitriptaline 50mg (I think) Poor to fair Mild help. Weight gain!
Discontinued Moodiness
Trazadone 150mg Poor No effect at all.
Discontinued
Requip 2 months Very poor I felt it made it worse.
Discontinued
Hydrocodone Discontinued Poor I was able to lay awake in bed longer
Neurontin 900mg Poor to fair Increased sleep from max
Discontinued sleep from 2hrs to 4hrs
Severe weight gain.
Alprazalam 1mg Poor No effect on sleep
Discontinued Dizziness
Klonipin Discontinue Very poor Mind went 100 miles
an hour totally restless
Ultram 50mg Poor to fair Kept me from committing Discontinued suicide Counter productive
in terms of RLS.
Clonidine hcl 0.1mg Poor to fair Vivid Nightmares,
Discontinued
Oxycodone-APAP 5-325 Poor No increase in amount of Discontinued sleep. “Bug eyed” awake.
Ferrous Sulfate 325mg none noticed so far None
Rozerem 8mg Discontinued Very Poor No difference.
Mirapex Discontinued Poor to Fair I felt worse after running out
but I didn't feel it helped
while taking it, that I
remember
Methadone 2.5mg started 2/11/09 Unknown at this time None noticed.
Just started.
This is one of my lists, and it's not pretty in this chat but its been a great help for me to take it into my doctors, they know every thing I've tried etc.
Last edited by woodsie357 on Wed Feb 18, 2009 9:33 pm, edited 1 time in total.
Someone cares about your sleepless nights
- woodsie357
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Bloody ############..
I am getting SO sick of these doctors. You have got to find someone.. And you know it won't get you an immediate cure, but see about going to your local news, especially if these two doctors are close together.. Tell them exactly what both doctors did to you, especially ripping up the Mayo Algorithm, and then the other one making you go cold turkey from both Requip and a Benzo.
If they don't eat that story up, they would be insane. I cannot believe this crap.. We need to start a web site that people can report these experiences on, so people know the name of the doctor and what they did, so they don't ever make the mistake of going there.
I am getting SO sick of these doctors. You have got to find someone.. And you know it won't get you an immediate cure, but see about going to your local news, especially if these two doctors are close together.. Tell them exactly what both doctors did to you, especially ripping up the Mayo Algorithm, and then the other one making you go cold turkey from both Requip and a Benzo.
If they don't eat that story up, they would be insane. I cannot believe this crap.. We need to start a web site that people can report these experiences on, so people know the name of the doctor and what they did, so they don't ever make the mistake of going there.
I support the malpractice theory. Not one thing the doctor did was appropriate, and some of it was directly harmful to you, the patient.
I'm especially concerned that you were arbitrarily given ranitidine, which will suppress your stomach acid, which in turn leads some people to absorb less iron and reduce their ferritin score, which in turn leads some people to worsened RLS.
I would report this person not only to the RLS foundation, but to whichever boards certified them. They should not, under any circumstances, be treating an RLS patient. Quite likely, they shouldn't be treating anyone at all if they think they can treat things they know nothing about.
I'm especially concerned that you were arbitrarily given ranitidine, which will suppress your stomach acid, which in turn leads some people to absorb less iron and reduce their ferritin score, which in turn leads some people to worsened RLS.
I would report this person not only to the RLS foundation, but to whichever boards certified them. They should not, under any circumstances, be treating an RLS patient. Quite likely, they shouldn't be treating anyone at all if they think they can treat things they know nothing about.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.