Aug 3rd will be my first time EVER seeing a doctor for RLS.
In the past I've had doctor's either ignore me when I tell them I have RLS or they get this blank look on thier faces and quickly change the subject...or they just say, "huh"?... you all know what I mean, I'm sure.
Okay...so since I'm having increased RLS symptoms since my hysterectomy and HRT therapy I'm going to see a neurologist for help. IT's about time really...it's long overdo. I've suffered with it for as long as I can remember, but it's the increase in symptoms that have made all my prior ways to manage the symptoms useless. I need help. I asked the receptionist if the doctor is familiar with RLS and she said, "Huh"? After going back and forth and her claiming he didn't treat this problem I asked her to ask the nurse to be sure . She finally came back saying he did treat it. I hope that he does.
I'm stuck with an HMO, so my options are limited for treatment.
I'm not sure what to expect when I go in. I'm so accustomed to keeping quiet about the RLS I think I'm either going to still be quiet or I'm going to explode with everything I've wanted to say for years...hoping to finally get some help!
Any thoughts on what I should expect? I will be writing my own history down for him and bring that with me. I like to go in prepared...but I honestly don't know what to expect or to ask at this point.
BTW, my RLS is diagnosed by self-diagnosis.
Thanks for any input!
Rita
1st Doctor's visit...need advice...
HI Rita,
Here are a few suggestions.
Firstly, keep reading! Learn as much about RLS as you can. There's a ton of information on this site that is invaluable.
Apart from your history, keep a sleep diary from now until your appt. Very short logs (as docs don't like to take much time with you, in most cases) describing how you feel each night and the measures you took to relieve the symptoms....if any. End each log with a total number hours of uninterrupted sleep, in bold. I think it makes more of an impression for a dr. to SEE how much sleep you are or aren't getting, instead of just HEARING it from you. Plus it gives him something to keep in your file for future reference.
Print out a copy of the RLS Algorithm for Clinicians found here. http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf Highlight the areas you feel pertain to your situation and go over it with your Dr. It's very brief so the Dr. should be willing to take a look at it.
I would also suggest reading up on the different medicines used to treat symptoms. Perhaps there is a med you want to try. It seems many are being helped by Mirapex, right now. I suggest reading the Pharmaceutical forum and this publication on the many different drug therapies. http://www.rlshelp.org/rlsrx.htm Knowledge is power.
If you have any questions on where to find specific information, feel free to ask. Someone will be able to direct you to it.
Let us know how the appointment goes.
Here are a few suggestions.
Firstly, keep reading! Learn as much about RLS as you can. There's a ton of information on this site that is invaluable.
Apart from your history, keep a sleep diary from now until your appt. Very short logs (as docs don't like to take much time with you, in most cases) describing how you feel each night and the measures you took to relieve the symptoms....if any. End each log with a total number hours of uninterrupted sleep, in bold. I think it makes more of an impression for a dr. to SEE how much sleep you are or aren't getting, instead of just HEARING it from you. Plus it gives him something to keep in your file for future reference.
Print out a copy of the RLS Algorithm for Clinicians found here. http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf Highlight the areas you feel pertain to your situation and go over it with your Dr. It's very brief so the Dr. should be willing to take a look at it.
I would also suggest reading up on the different medicines used to treat symptoms. Perhaps there is a med you want to try. It seems many are being helped by Mirapex, right now. I suggest reading the Pharmaceutical forum and this publication on the many different drug therapies. http://www.rlshelp.org/rlsrx.htm Knowledge is power.
If you have any questions on where to find specific information, feel free to ask. Someone will be able to direct you to it.
Let us know how the appointment goes.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
-
Anonymous
Thank you...
Thank you Sole...thank you soooooo much!
That gives me a good way to get started...I appreciate the help.
Last night I did keep a log of what I went through (although I hadn't thought of putting the hours of actual sleep in bold...so I'll have to go do that). I was shocked to see it myself...I think I've just ignored it in my mind (to try to keep myself from going insane) or I grew accustomed to it in some strange way. By the morning hours I had taken 1 darvocet and 3 vicodin!...and I woke up tired from pacing all night while I waited for each dose to work.
I'm nervous about this doctor's appointment. (can you tell???
)
I don't want to deal with someone who dismisses what I'm dealing with or who rolls his eyes and considers me crazy when I tell him I react oposite to expected results from medications. Seriously...if I take a cold medication I'll actually sneeze and cough more (not to mention the increased RLS)! If I take something to sleep I won't sleep for at least 24 hours...if I take something to keep me awake I feel drwosy (you get the point).
I've avoided getting help for the RLS because I'm not wanting to deal with another doctor that doesn't understand...but I need to give this doctor a chance. Maybe the sleep/symptom journal will help. It will at least put down in writing some of what I experience.
Thanks for the help Sole!
Rita
That gives me a good way to get started...I appreciate the help.
Last night I did keep a log of what I went through (although I hadn't thought of putting the hours of actual sleep in bold...so I'll have to go do that). I was shocked to see it myself...I think I've just ignored it in my mind (to try to keep myself from going insane) or I grew accustomed to it in some strange way. By the morning hours I had taken 1 darvocet and 3 vicodin!...and I woke up tired from pacing all night while I waited for each dose to work.
I'm nervous about this doctor's appointment. (can you tell???
)
I don't want to deal with someone who dismisses what I'm dealing with or who rolls his eyes and considers me crazy when I tell him I react oposite to expected results from medications. Seriously...if I take a cold medication I'll actually sneeze and cough more (not to mention the increased RLS)! If I take something to sleep I won't sleep for at least 24 hours...if I take something to keep me awake I feel drwosy (you get the point).
I've avoided getting help for the RLS because I'm not wanting to deal with another doctor that doesn't understand...but I need to give this doctor a chance. Maybe the sleep/symptom journal will help. It will at least put down in writing some of what I experience.
Thanks for the help Sole!
Rita
You're welcome, Rita. Another thing everyone here recommends, if at all possible, is to take your S.O. with you. They lend tremendous credibilty. I'm taking my hubby with me next Thursday.
Yes, it is quite a shock to see the actual hours of sleep on paper, huh? Mine shocked me too.
Are you taking the Vicodin for pain? For me, it keeps me awake so I'm not shocked that you aren't able to sleep well with it. Darvocet has the same effect. Relaxes me but keeps me awake.
My hubby has the same results to meds as you do so you're not alone. Everything works either the opposite of how it's supposed to or he only gets the side effects.
I think most of us get nervous about seeing our Dr.'s. Especially when they're not very learned about RLS or we don't know them well. Just try not to stress about it too much. I was a baskey case all last week and my legs went through hell because of it. At one point, I had to employ Jumpy's help just to put two coherant thoughts together. He was kind enough to save me from myself.
You'll be fine.
Yes, it is quite a shock to see the actual hours of sleep on paper, huh? Mine shocked me too.
Are you taking the Vicodin for pain? For me, it keeps me awake so I'm not shocked that you aren't able to sleep well with it. Darvocet has the same effect. Relaxes me but keeps me awake.
My hubby has the same results to meds as you do so you're not alone. Everything works either the opposite of how it's supposed to or he only gets the side effects.
I think most of us get nervous about seeing our Dr.'s. Especially when they're not very learned about RLS or we don't know them well. Just try not to stress about it too much. I was a baskey case all last week and my legs went through hell because of it. At one point, I had to employ Jumpy's help just to put two coherant thoughts together. He was kind enough to save me from myself.
You'll be fine.Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
-
Anonymous
Hi Sole...
I initially took the vicodin for pelvic/intestinal pain (it was due to endometriosis and adhesions), then for post-op pain as needed. I had been on a steady course of it for over a year, and had stopped taking it shortly after the surgery because (yay!) I was finally out of pain for the first time in years!
I found that the RLS has a weird 'pain' connected with it (for me anyways). It's not painful like what I experienced before, but it's uncomfortable, and it aches. Since nothing else I had OTC, was working, I thought about using the vicodin and darvocet (The darvocet actually does make me drowsy without keeping me awake). It helped...at least I could get some kind of short rest. But, I don't like trying to manage this on my own with vicodin (and it's not working that great) so I decided to get in to see someone for help.
I wish my DH could come with me. I'm hesitant to ask him because he's had to be with me for so many other doctor appointments and surgeries in the past year. Maybe I'll work up the courage.
I'm fortunatley not too shy when it comes to my own healthcare...so hopefully I'll be able to find someone I can work with to get this under control.
Thanks for your help (((sole)). It's nice to have a friend to talk to!
Rita
I found that the RLS has a weird 'pain' connected with it (for me anyways). It's not painful like what I experienced before, but it's uncomfortable, and it aches. Since nothing else I had OTC, was working, I thought about using the vicodin and darvocet (The darvocet actually does make me drowsy without keeping me awake). It helped...at least I could get some kind of short rest. But, I don't like trying to manage this on my own with vicodin (and it's not working that great) so I decided to get in to see someone for help.
I wish my DH could come with me. I'm hesitant to ask him because he's had to be with me for so many other doctor appointments and surgeries in the past year. Maybe I'll work up the courage.
I'm fortunatley not too shy when it comes to my own healthcare...so hopefully I'll be able to find someone I can work with to get this under control.
Thanks for your help (((sole)). It's nice to have a friend to talk to!
Rita
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Gizmo
Hi there Rita,
Well congratulations on finally getting an appointment with a Neurologist about rls.
I am in New Zealand and saw a Neurologist for the first time about 8 and a half years ago. He put me on to Madopar. Unfortunately over the last 6 months I have been finding it wasn't working for me so I have been to see him this month again and he has now put me on to permex (peroglide) I have been taking this for about 2 weeks now and finding it does make me sleepy but boy I have a great sleep now days. No excuse now to say I am tired.
I hope it all goes well for you on the 3rd August. I remember my doctor asking me initially - how would you describe the feeling you get and I found it hard to describe it but he told me a story about people using one word to describe it and one that did come up was formication (sounds rude if you don't say it carefully) - formic is something that ants give off and to me rls feels like ants scurrying under your skin. Thought that was a good way to describe it.
Anyway let us know how you get on
Cheers
Dale
Well congratulations on finally getting an appointment with a Neurologist about rls.
I am in New Zealand and saw a Neurologist for the first time about 8 and a half years ago. He put me on to Madopar. Unfortunately over the last 6 months I have been finding it wasn't working for me so I have been to see him this month again and he has now put me on to permex (peroglide) I have been taking this for about 2 weeks now and finding it does make me sleepy but boy I have a great sleep now days. No excuse now to say I am tired.
I hope it all goes well for you on the 3rd August. I remember my doctor asking me initially - how would you describe the feeling you get and I found it hard to describe it but he told me a story about people using one word to describe it and one that did come up was formication (sounds rude if you don't say it carefully) - formic is something that ants give off and to me rls feels like ants scurrying under your skin. Thought that was a good way to describe it.
Anyway let us know how you get on
Cheers
Dale
Formic acid
Hello, Dale:
Welcome from New Zealand. (Auckland?). You are far from us but relatively close to Nadia, one of our important contributors to this site.
That is a good one, formication! As you also imply your doctor must be referring to formic acid (CH3COOH - methyl carboxylic acid), the first member of the organic acids in the aliphatic series (the second is vinegar - acetic acid). In some languages, it is even referred to as "ant acid." It is also contained in the needles of nettle.
Paresthesia does bring up the vivid picture of ants running under your skin (and secreting formic acid, brr.. what a thought
). It also implies a burning sensation some people report, which is what formic acid does to you once it penetrates the skin.
This is important as some doctors are still in denial about pain caused by RLS.
Yes, I have also been hearing good things about pergolide. Theoretically one can expect less chance of augmentation due to its long half life.
I hope that you will share your long experiences with this affliction of thousand handles.
Welcome from New Zealand. (Auckland?).
You are far from us but relatively close to Nadia, one of our important contributors to this site.
That is a good one, formication! As you also imply your doctor must be referring to formic acid (CH3COOH - methyl carboxylic acid), the first member of the organic acids in the aliphatic series (the second is vinegar - acetic acid). In some languages, it is even referred to as "ant acid." It is also contained in the needles of nettle.
Paresthesia does bring up the vivid picture of ants running under your skin (and secreting formic acid, brr.. what a thought
). It also implies a burning sensation some people report, which is what formic acid does to you once it penetrates the skin.
This is important as some doctors are still in denial about pain caused by RLS.
Yes, I have also been hearing good things about pergolide. Theoretically one can expect less chance of augmentation due to its long half life.
I hope that you will share your long experiences with this affliction of thousand handles.
Jumpy Owl
Hello, Rita!
A belated welcome to you on this site. I wanted to post to you before your upcoming visit to the doctor. You are right. It is important to see your doctor well prepared. However, do not be nervous. One should assume that he/she is there to help you, and with this affliction he/she needs your help almost as much as you need theirs.
I am quoting some important points from the "An Algorithm for the Management of RLS, by M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004. Print it out and take it with you, if you feel a need to.
To the common question how Dr can help you, tell him/her that you suspect having the so-called Restless Leg Syndrome.
The characteristic symptoms of the disease are "Limb discomfort and urge to move legs which occurs at rest. [paresthesia or formication if you please. ] Paresthesia are relieved by movement and are worst in the evening and night. (this is an important point).
Paresthesia cannot be determined by an objective measurement. However, RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). Now this can be measured during a sleep test.
Here you can tell the Dr that you do not sleep well, and if Dr. decides on a sleep test that may be of a great diagnostic value.
RLS can range from from annoying to distressing and infrequent to daily. Here tell the doctor, how frequent and severe yours is.
You may have already told the Dr that RLS is a cause of onset or maintenance insomnia. Tell Dr which and also tell him/her how much it interferes with your life. Sole suggested a sleep diary - good idea - to show him/her at this point.
Tell Dr that RLS is quite prevalent (5-15% of population) it is just usually not recognized.
Here you can tell Dr. whether the affliction runs in your family (RLS is familial in 50% of the case). It can also be idiopathic (of unknown causes) or or related to acquired conditions (iron deficiency/renal failure).
Regulatory status: FDA has not yet approved any medication for the treatment of RLS, but the "off label" use (at the doctor's discretion) are surprisingly well established.
Here you should let him/her how severe your RLS is. It is important because treatment does depend on severity.
The three distinguished severities are as follow:
Intermittent RLS (that is troublesome enough to require treatment but does not necessitate require daily therapy)
Daily RLS (that is frequent and troublesome to necessitate daily therapy)
Refractory RLS (which is daily RLS that had been treated with a dopamine agonist unsuccessfully.
SOME IDEAS ON TREATMENTS:
INTERMITTENT RLS
Nonpharmacological therapy
• Determine ferritin level and administer iron replacement
• Mental alerting acitivties to reduce boredom
• Abstinence from caffeine, nicotine, and alcohol
• IMPORTANT: Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if so whether they can be discontinued.
DAILY RLS (which is probably what you have)
Medications
• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)
• Gabapentin/Neurontin (anticonvulsive)
• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram
Remark: We do not know as yet whether you have refractory RLS or not since you have not been treated with a dopamine agonist.
POTENTIAL FUTURE THERAPIES
Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.
Interestingly, magnesium (ions) has been reported to be effective.
In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years!
___________________________________
Well I hope it helps, if you have any questions do not hesitate to ask me.
I am quoting some important points from the "An Algorithm for the Management of RLS, by M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004. Print it out and take it with you, if you feel a need to.
To the common question how Dr can help you, tell him/her that you suspect having the so-called Restless Leg Syndrome.
The characteristic symptoms of the disease are "Limb discomfort and urge to move legs which occurs at rest. [paresthesia or formication if you please. ] Paresthesia are relieved by movement and are worst in the evening and night. (this is an important point).
Paresthesia cannot be determined by an objective measurement. However, RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). Now this can be measured during a sleep test.
Here you can tell the Dr that you do not sleep well, and if Dr. decides on a sleep test that may be of a great diagnostic value.
RLS can range from from annoying to distressing and infrequent to daily. Here tell the doctor, how frequent and severe yours is.
You may have already told the Dr that RLS is a cause of onset or maintenance insomnia. Tell Dr which and also tell him/her how much it interferes with your life. Sole suggested a sleep diary - good idea - to show him/her at this point.
Tell Dr that RLS is quite prevalent (5-15% of population) it is just usually not recognized.
Here you can tell Dr. whether the affliction runs in your family (RLS is familial in 50% of the case). It can also be idiopathic (of unknown causes) or or related to acquired conditions (iron deficiency/renal failure).
Regulatory status: FDA has not yet approved any medication for the treatment of RLS, but the "off label" use (at the doctor's discretion) are surprisingly well established.
Here you should let him/her how severe your RLS is. It is important because treatment does depend on severity.
The three distinguished severities are as follow:
Intermittent RLS (that is troublesome enough to require treatment but does not necessitate require daily therapy)
Daily RLS (that is frequent and troublesome to necessitate daily therapy)
Refractory RLS (which is daily RLS that had been treated with a dopamine agonist unsuccessfully.
SOME IDEAS ON TREATMENTS:
INTERMITTENT RLS
Nonpharmacological therapy
• Determine ferritin level and administer iron replacement
• Mental alerting acitivties to reduce boredom
• Abstinence from caffeine, nicotine, and alcohol
• IMPORTANT: Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if so whether they can be discontinued.
DAILY RLS (which is probably what you have)
Medications
• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)
• Gabapentin/Neurontin (anticonvulsive)
• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram
Remark: We do not know as yet whether you have refractory RLS or not since you have not been treated with a dopamine agonist.
POTENTIAL FUTURE THERAPIES
Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.
Interestingly, magnesium (ions) has been reported to be effective.
In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years!
___________________________________
Well I hope it helps, if you have any questions do not hesitate to ask me.
Last edited by jumpyowl on Thu Jul 29, 2004 3:12 pm, edited 3 times in total.
Jumpy Owl
-
Anonymous
Thank you!!!
Thank you Dale and JumpyOwl!
I really appreciate the help. I will definately make use of the info you gave me and get myself as prepared as possible for the appointment.
LOL...I'm gonna have nightmares thinking about the ants crawling under my skin! Of course, I'd have to actually be SLEEPING to have nightmares...so probably no danger of that happening. Good description though...that's what it feels like to me. It also feels like those ants stuck thier little feet in an electrical socket! *yikes*!
Thanks for the help. I appreciate it!
Rita
I really appreciate the help. I will definately make use of the info you gave me and get myself as prepared as possible for the appointment.
LOL...I'm gonna have nightmares thinking about the ants crawling under my skin! Of course, I'd have to actually be SLEEPING to have nightmares...so probably no danger of that happening. Good description though...that's what it feels like to me. It also feels like those ants stuck thier little feet in an electrical socket! *yikes*!
Thanks for the help. I appreciate it!
Rita
Another thing...
just occurred to me Rita! The RLS people are very active in California, especially in South California. Can you get in touch with a group there? Here is the link to their web site:
http://www.rlshelp.org/
http://www.rlshelp.org/
Jumpy Owl
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Anonymous
Hi Jumpyowl...
Yes...I live just a few miles from where the support group meets in Downey, CA. I plan to be there in October.
Rita
Rita
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Anonymous
My doctor's visit...
Well, I went in for my appointment (and thank you everyone who offered me support and information to help me prepare for the appointment!).
I waited over and hour and a half in a VERY tiny waiting room (max. occupancy was 15 people, but it easily went beyond 15 people most of the time).
When I did see the doctor I handed him my printout of my RLS history and a description of how I experienced RLS. He asked very specific questions and did the usual neurological exam (hey, on a good day I'm not sure I'm suppose to be able to touch my finger to my nose with my eyes closed...lol, I'm not that coordinated!)
So...he gave me Mirapex .125 to try (gave me samples of that) and of .25...told me to bump up the dosage if it didnt work and to call him anytime if I needed further help, otherwwise come back in 6 weeks (but I bet all those other people in the lobby were told to come back in 6 weeks too because I couldn't get another appointment until October 19th! lol)
Over-all I felt that the appointment went okay. I'm not happy with the office (it was chaotic, crowded and icky looking) but the doctor was good...and I'd go just about anywhere for a good doctor who understands RLS.
So...that's how my appointment went.
Rita
I waited over and hour and a half in a VERY tiny waiting room (max. occupancy was 15 people, but it easily went beyond 15 people most of the time).
When I did see the doctor I handed him my printout of my RLS history and a description of how I experienced RLS. He asked very specific questions and did the usual neurological exam (hey, on a good day I'm not sure I'm suppose to be able to touch my finger to my nose with my eyes closed...lol, I'm not that coordinated!)
So...he gave me Mirapex .125 to try (gave me samples of that) and of .25...told me to bump up the dosage if it didnt work and to call him anytime if I needed further help, otherwwise come back in 6 weeks (but I bet all those other people in the lobby were told to come back in 6 weeks too because I couldn't get another appointment until October 19th! lol)
Over-all I felt that the appointment went okay. I'm not happy with the office (it was chaotic, crowded and icky looking) but the doctor was good...and I'd go just about anywhere for a good doctor who understands RLS.
So...that's how my appointment went.
Rita