Hello everyone!
We believe my husband has rls and are looking for a dr. in Arizona. The dr directory on this site isn't working for me. Can someone suggest one or maybe another link that I can use to find a dr. who KNOWS about this.
Thanks so much!
Aimee
Need a dr. in Arizona
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ViewsAskew
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Aimee, I took the liberty of changing the title of your post slightly so that people know where you need the doctor. I'm not sure why the list isn't working, however I'm sure the Foundation will have it up shortly.
Finding a doctor is harder than just looking at a list, in my opinion. Many doctors can put their name on a list, but they may not be a good fit for me and how I like to work with my doctors. Since RLS is sort of a new disorder to many doctors, they are just starting to take it seriously. Many are relying on outdated information learned 15 or 20 years ago in a 15 minutes segment of a medical school class. Your husband may not have severe RLS, but he might be given the wrong information. If it were me, I would do the following. (Have done this, actually).
1. Get familiar with the Mayo Clinic Algorithm http://www.mayoclinicproceedings.com/in ... D=744&UID=
This will ensure that you know what a doctor should be doing if he or she is current with the newest research. If he or she wants to do things that are not advocated by this, then you may need a new doctor.
2. Go through your insurance list of approved doctors.
My insurance has a list online, so I looked at all doctors within a certain radius of my house.
2. Highlight the names of the neurologists and sleep doctors.
I was able to get a list of about 25, but I live in a large metro area.
3. Also highlight the names of five or six GPs.
4. Create a questionairre. Include questions such as:
Have you treated any RLS patients before?
(If they say YES, then continue with these questions, if not, see the list of questions to ask that are listed below)
Have you had any difficult cases to treat?
Do you have a relatively large number of regular RLS patients?
Do you use the Mayo Clinic Algorithm in your treatment process?
If they say no to the first question, then ask this:
Are you willing to treat RLS patients and learn current treatment methods for this extremely dibilitating disorder?
5. Determine what you are going to say when you call the doctor's offices and to whom you are going to speak. When I did this, I called the doctor's nurses. All doctors have a dedicated nurse that takes their phone calls, so you most likely won't evey get the doctor anyway. I would say something like this, " Hi, my name is Ann and I have very severe RLS, Restless Legs Syndrome. My life is being terribly impacted by this disorder, and I haven't slept more than one to two hours a night for two months. I have already been to several doctors to no avail. I am hoping your doctor will be able to help me." Then I would proceed to ask the questions on my list.
Most nurses went out of their way to help me at that point, sometimes referring me to OTHER doctors, saying that they didn't think the doctor I called about had enought experience.
Now, I do realize that not everyone is in the situation I was in. If this is your first time looking for a doctor, you'd want to tailor your opening speech to say something different, but still compelling. Maybe something like this, "Hi, my name is X. My husband is experiencing RLS, Restless Legs Syndrome. He's losing sleep, having difficulty getting through work each day, and we've had to stop doing many of the things in the evening that we love, like snuggling on the couch to watch a movie. I've heard that this is a common disorder, but wasn't really diagnosed much until recently, so many doctors don't yet have much experience treating it, or even know much about it. " And then go into the questions.
6. No matter what the experience level of the doctor, the most important thing to find out is whether or not this doctor will LISTEN to you, the patient. This can be hard to find out, but many nurses will gie you subtle hints about the doctor's demeanor and how he or she treats patients. You could say something like this, "It's important to me to participate in my treatment and to know that the doctor will both listen to me and be open to new ideas. I know you can't say anything mean about your doctor, nor would I want you to, but can you tell me if you think she would be open to that?"
When I did this, I called about 35 doctors. It took me over 6 hours to get all the names, write them down, call them, wait for return calls, etc. But it was worth it. I got great information and started making appointments.
And once I made an appointment, I wasn't shy about leaving the practice if the doctor didn't help me as I needed.
Hope this helps some.
Ann
Finding a doctor is harder than just looking at a list, in my opinion. Many doctors can put their name on a list, but they may not be a good fit for me and how I like to work with my doctors. Since RLS is sort of a new disorder to many doctors, they are just starting to take it seriously. Many are relying on outdated information learned 15 or 20 years ago in a 15 minutes segment of a medical school class. Your husband may not have severe RLS, but he might be given the wrong information. If it were me, I would do the following. (Have done this, actually).
1. Get familiar with the Mayo Clinic Algorithm http://www.mayoclinicproceedings.com/in ... D=744&UID=
This will ensure that you know what a doctor should be doing if he or she is current with the newest research. If he or she wants to do things that are not advocated by this, then you may need a new doctor.
2. Go through your insurance list of approved doctors.
My insurance has a list online, so I looked at all doctors within a certain radius of my house.
2. Highlight the names of the neurologists and sleep doctors.
I was able to get a list of about 25, but I live in a large metro area.
3. Also highlight the names of five or six GPs.
4. Create a questionairre. Include questions such as:
Have you treated any RLS patients before?
(If they say YES, then continue with these questions, if not, see the list of questions to ask that are listed below)
Have you had any difficult cases to treat?
Do you have a relatively large number of regular RLS patients?
Do you use the Mayo Clinic Algorithm in your treatment process?
If they say no to the first question, then ask this:
Are you willing to treat RLS patients and learn current treatment methods for this extremely dibilitating disorder?
5. Determine what you are going to say when you call the doctor's offices and to whom you are going to speak. When I did this, I called the doctor's nurses. All doctors have a dedicated nurse that takes their phone calls, so you most likely won't evey get the doctor anyway. I would say something like this, " Hi, my name is Ann and I have very severe RLS, Restless Legs Syndrome. My life is being terribly impacted by this disorder, and I haven't slept more than one to two hours a night for two months. I have already been to several doctors to no avail. I am hoping your doctor will be able to help me." Then I would proceed to ask the questions on my list.
Most nurses went out of their way to help me at that point, sometimes referring me to OTHER doctors, saying that they didn't think the doctor I called about had enought experience.
Now, I do realize that not everyone is in the situation I was in. If this is your first time looking for a doctor, you'd want to tailor your opening speech to say something different, but still compelling. Maybe something like this, "Hi, my name is X. My husband is experiencing RLS, Restless Legs Syndrome. He's losing sleep, having difficulty getting through work each day, and we've had to stop doing many of the things in the evening that we love, like snuggling on the couch to watch a movie. I've heard that this is a common disorder, but wasn't really diagnosed much until recently, so many doctors don't yet have much experience treating it, or even know much about it. " And then go into the questions.
6. No matter what the experience level of the doctor, the most important thing to find out is whether or not this doctor will LISTEN to you, the patient. This can be hard to find out, but many nurses will gie you subtle hints about the doctor's demeanor and how he or she treats patients. You could say something like this, "It's important to me to participate in my treatment and to know that the doctor will both listen to me and be open to new ideas. I know you can't say anything mean about your doctor, nor would I want you to, but can you tell me if you think she would be open to that?"
When I did this, I called about 35 doctors. It took me over 6 hours to get all the names, write them down, call them, wait for return calls, etc. But it was worth it. I got great information and started making appointments.
And once I made an appointment, I wasn't shy about leaving the practice if the doctor didn't help me as I needed.
Hope this helps some.
Ann
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.
-
Guest
Thanks so much for all the info! 
We're not positive that he even has it but I'm pretty sure he does.
I don't want him to just see any doctor. I want him to see someone who knows about this. I'll look in my provider directory and see if I can come up with anything. If anyone knows a specific doctor in Arizona, please let me know. We're willing to drive for a good doctor!
Thanks again!
Aimee
We're not positive that he even has it but I'm pretty sure he does.
I don't want him to just see any doctor. I want him to see someone who knows about this. I'll look in my provider directory and see if I can come up with anything. If anyone knows a specific doctor in Arizona, please let me know. We're willing to drive for a good doctor!
Thanks again!
Aimee
-
ViewsAskew
- Moderator
- Posts: 16607
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Aimee, the diagnosis of it is really easy. In fact, a doctor really doesn't make the determination, the person who has it does. The only reason a doctor is involved in the diagnosis is when there may be more than one thing wrong so it is hard to tell what is responsible.
1. Uncomfortable, painful, strange, undescribable sensations in the affected body part.
2. Movement makes the sensation go away.
3. Happens when at rest, such as trying to go to sleep, relax while reading a book or watching a movie, etc.
4. Happens primarily at night/in evening time.
He could also have PLMD, which does require a sleep study. PLMD does not always affect sleep even if you have it. It only needs to be treated if it causes arousals at night, preventing the person from staying in the approprate stages of sleep.
A person only requires treatment if the RLS is preventing him or her from having a normal quality of life - keeping him awake at night, can't fall asleep, getting less than the requisite amount of sleep, affecting job performance, keeping you from sleeping together, affecting intimacy, etc. Often, there are many things a person can do that a doctor will not recommend but that help greatly: find the right amount of exercise, eliminate foods that set it off, take vitamins that often help people reduce the RLS, etc.
Ann
1. Uncomfortable, painful, strange, undescribable sensations in the affected body part.
2. Movement makes the sensation go away.
3. Happens when at rest, such as trying to go to sleep, relax while reading a book or watching a movie, etc.
4. Happens primarily at night/in evening time.
He could also have PLMD, which does require a sleep study. PLMD does not always affect sleep even if you have it. It only needs to be treated if it causes arousals at night, preventing the person from staying in the approprate stages of sleep.
A person only requires treatment if the RLS is preventing him or her from having a normal quality of life - keeping him awake at night, can't fall asleep, getting less than the requisite amount of sleep, affecting job performance, keeping you from sleeping together, affecting intimacy, etc. Often, there are many things a person can do that a doctor will not recommend but that help greatly: find the right amount of exercise, eliminate foods that set it off, take vitamins that often help people reduce the RLS, etc.
Ann
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.
-
Guest
Oh I see. I don't know much about the topic.
We've been married for 14 years and he's always "moved".
He says he needs to move to feel comfortable. He says it is a strange feeling he gets but when he moves it goes away. We've both had lots of sleepless nights. I counted one time (when I couldn't sleep because of it) and he had to shake or move at least one time time each 2 minutes. Sometimes it's just shaking his foot. Sometimes it's a lifting and throwing down kinda thing (at least that's what it feels like to me). He has always said that I'm the one that has the problem because I can't sleep (because of his moving). Now he is saying that it is him that isn't sleeping. We've been hearing about rls and think it is what he has but don't know....we just want some rest
Thanks so much for all your information! I'm new to researching it but very glad there are forums like this!!!
Aimee
We've been married for 14 years and he's always "moved".
He says he needs to move to feel comfortable. He says it is a strange feeling he gets but when he moves it goes away. We've both had lots of sleepless nights. I counted one time (when I couldn't sleep because of it) and he had to shake or move at least one time time each 2 minutes. Sometimes it's just shaking his foot. Sometimes it's a lifting and throwing down kinda thing (at least that's what it feels like to me). He has always said that I'm the one that has the problem because I can't sleep (because of his moving). Now he is saying that it is him that isn't sleeping. We've been hearing about rls and think it is what he has but don't know....we just want some rest
Thanks so much for all your information! I'm new to researching it but very glad there are forums like this!!!
Aimee
it does sound suspiciously like rls to me!?
the rls criteria that anne has posted is pretty good at determining if he does have rls..... has he seen it? does it make him go AHA!
try getting him to answer these questions in link below and if he is ticking of lots of the answers then he probably does have rls? print it off for your doctor to make it easy for him/her.
http://www.restlesslegs.com/di2.html
sounds like you both need to do a bit of reading up to enable him to be able to learn and make changes to enable you both to get sleep again, whether that be by non medicational means or by meds.
read the two stickys in the new to rls section. theres lots to read but i will definatly say its worth it!
here- http://bb.rls.org/viewtopic.php?t=1068& ... 44b872a5d5
and here- http://bb.rls.org/viewtopic.php?t=94&si ... 44b872a5d5
the rls criteria that anne has posted is pretty good at determining if he does have rls..... has he seen it? does it make him go AHA!
try getting him to answer these questions in link below and if he is ticking of lots of the answers then he probably does have rls? print it off for your doctor to make it easy for him/her.
http://www.restlesslegs.com/di2.html
sounds like you both need to do a bit of reading up to enable him to be able to learn and make changes to enable you both to get sleep again, whether that be by non medicational means or by meds.
read the two stickys in the new to rls section. theres lots to read but i will definatly say its worth it!
here- http://bb.rls.org/viewtopic.php?t=1068& ... 44b872a5d5
and here- http://bb.rls.org/viewtopic.php?t=94&si ... 44b872a5d5
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Guest
Again thanks for all the information! I REALLY appreciate it. Boy, I guess there is LOTS to learn! I was able to get the provider directory list for Arizona I'm going to print out all this information for my husband and see what he wants to do. I know he has mentioned that he doesn't want to be on medication. It sounds like there are definately alternatives to that.
Thanks!! Aimee
I'm going to print out all this information for my husband and see what he wants to do. I know he has mentioned that he doesn't want to be on medication. It sounds like there are definately alternatives to that.
Thanks!! Aimee