Doctor-Honest Opinion

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

About 5 years ago I called 25 or so doctors in the Chicago area that supposedly treated RLS.

I asked to speak to the doctor's nurse. I said that I had 24/7 RLS that had not so far responded to typical treatments. I asked the nurse the following:

1. How many patients does the doctor normally see who have RLS?
2. Does the doctor have any experience with a case that was difficult to treat?
3. If you were a patient in my situation, would you recommend this doctor?
4. Of the things the doctor treats, where does RLS fall in terms of his/her interest and knowledge?
5. How would you describe how the doctor relates to his/her patients? (Funny, serious, mutual, I'm the boss, etc.)

I imagine I had more than that, but those are what I remember at the time. I found that 90 percent of the nurses were willing to help me immensely. One of them actually said that she didn't suggest I see the doctor I called about, but another one in the practice.

A few said they'd get back to me and did. I choose two I thought would be best. The first did understand RLS but he and I weren't a good match in terms of the relationship (he was friends with my GP. My GP later told me that this specialist told my GP that he'd never met a patient who knew so much about RLS and he didn't like it. He wanted to be the BIG boss.)

The other also understood but wasn't willing to move into opioids when all else failed. I didn't want to ask that question because I felt it might signal I was drug seeking.

I hope others have something to add or offer differently so you can compare different approaches you could take.

You know, after both these doctors failed to help me, I'd seen about 8-10 doctors and tried 10 or more medications. My sister was seeing my old family doctor and recommended I see him. He was a GP, but he really listened and was willing to learn, to work with his patients. I'd moved, but decided she had a good point. He became my RLS doctor for 3 years. I drove about 60 miles to see him. He communicated with DR B, did research, and generally did his best to help me.

If I had to do it again, I'd ask every person I knew for the most compassionate doctor who listened and who was willing to work with other doctors and with the patient. I'd make them my GP, take in an email from DR B and one of the RLS books, and go from 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.

Polar Bear
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Post by Polar Bear »

ViewsAskew wrote: I'd ask every person I knew for the most compassionate doctor who listened and who was willing to work with other doctors and with the patient. I'd make them my GP, take in an email from DR B and one of the RLS books, and go from there.


I was lucky, compassionate doc already was my GP, he read Dr B emails, and the Mayo Clinic Algorithm. We went from there and have had some success.

It is now 5 am and I am at my pc following a restless night, but it was not the rls symptoms themselves keep me from decent sleep, it was the related insomnia. And I didn't want' to 'top up' my sleeping pill because little granddaughter is arriving in a couple of hours.

So, I agree, compassionate doc is top of the list, then train him to be as near an expert in rls as possible.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Sleuth
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Post by Sleuth »

Thanks, Ann.

I made the mistake of asking a doctor at our first meeting if they would prescribe opiates. She said she did not.

My old psychiatrist told me that I would not find many doctors who would prescribe opiates. He said doctors were afraid of losing their license because of doing that. I had no idea what he was talking about.

I have never met a doctor who is willing to learn anything from a patient. They are all like Gods and get upset if you don't treat them like that.

When I mentioned that I might need opiates to my internist, who is basically my primary doctor, she begged me not to do it. I don't belong to an HMO so don't need a referral from her. She is a good doctor and has been very nice to me on other problems. She knows nothing about RLS.

Dale

ViewsAskew
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Post by ViewsAskew »

Yeah, I had one of those nice internists, too. She was with me through the hundreds of sleepless nights, seeing me when I looked horrible, when my husband was propping me up in the room. She tried very hard to get someone else to help initially.

After three years of seeing my old GP, I tried her again. He wasn't in my insurance plan, it was a very long drive, and I thought she'd be willing to take over for him. She wouldn't do it at all. She said no one in her practice (there are 5 other docs in her group) had ever prescribed methadone.

After an hour of trying to convince her, she said that IF I'd go to a neurologist every 3 months, see her every month, and if the neurologist ordered it, she'd do it. That was laughable. She was the one who sent me to four or five neurologists who all had NO idea what to do. She wouldn't work with my old GP because he wasn't a specialist.

Crazy world.
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.

Sleuth
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Post by Sleuth »

I was told that I would have to go to a pain clinic to get prescriptions for opiates.

Since the last doctor I saw was going to prescribe them, I thought there would be no problem getting them from other doctors. Now I see I was wrong.

If only I could get the depression under control, I would have the energy to deal with other things. I'm hoping this psychiatrist I see on Monday will help. I'm long overdue for a break.

Dale

Sleuth
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Post by Sleuth »

Polar Bear wrote:
ViewsAskew wrote: I'd ask every person I knew for the most compassionate doctor who listened and who was willing to work with other doctors and with the patient. I'd make them my GP, take in an email from DR B and one of the RLS books, and go from there.


I was lucky, compassionate doc already was my GP, he read Dr B emails, and the Mayo Clinic Algorithm. We went from there and have had some success.

It is now 5 am and I am at my pc following a restless night, but it was not the rls symptoms themselves keep me from decent sleep, it was the related insomnia. And I didn't want' to 'top up' my sleeping pill because little granddaughter is arriving in a couple of hours.

So, I agree, compassionate doc is top of the list, then train him to be as near an expert in rls as possible.


I brought Dr. B's emails to my old psychiatrist. He got mad. He would not interact with any other doctor under any circumstances, which is one of the reasons why he's my ex-doctor.

I sent portions of Dr. B's emails to my old RLS doctor. She didn't appreciate my doing that either. She also told me not to participate in these boards because nobody knew what they were talking about. She said the boards were full of misinformation.

Dale

Polar Bear
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Post by Polar Bear »

She also told me not to participate in these boards because nobody knew what they were talking about. She said the boards were full of misinformation.

Is c**p an inappropriate word to use ??
Sorry if I offend, but she does not appear to have a clue about support forums, and certainly not about this one.

The more I hear, the more I appreciate my doc, who on his own admission knows little about rls..... but he is cooperative and willing.
Betty
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Betty/WV
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Post by Betty/WV »

Hi Sleuth & Polar Bear:

This doctor, who said not to read these boards. Well, she really doesn't know what she is talking about. We all realize we have to be careful with what information we go with. But she offers nothing better.

My doctor also admits he know little about RLS, but he is also willing to learn. And he has sent me to a neuro, who also admits he knows little about RLS, but both of them willingly accepted the Mayo Clinic Algorythm. And other information that I took to them.

Over the years I have had such bad experiences with doctors and my RLS. That I get angry when I hear these things. :x :x

Wish you success in your journey with RLS. And it is a journey, usually a long one.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Post by ViewsAskew »

There are MANY boards on which the information is worse than useless....it's dangerous. I don't think that many doctors have experience with a board like this one. We have a lot of members who've spent a lot of time researching, learning, and being careful about the information they offer. Many doctors have NO clue that a board like this can exist.
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.

Neco
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Post by Neco »

Be that as it may, it doesn't justify their attitude if they are specifically singling this board out and telling people not to come here.

Much less if they have never actually been to THIS board; and if they have then they damn well know they are being dishonest about our members. The only reason to be dishonest about this board in particular is either you are just a clueless twit, or you are afraid your patients will get information from this board that contradicts what you have told them, and probably shows you're wrong.

Of course we can speculate on someone's reasons all day long. But I would bet my life that 99% of the information dispersed through this forum is often more accurate than anything from your run of the mill doctor. Which sadly, is a reflection of the poor state of post graduate education and willingness on their part(s) to learn new things.

Polar Bear
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Post by Polar Bear »

I would agree our advice would be more accurate than that of most run of the mill doctors. Doc's attitude regarding forums, i would like to think, is her ignorance rather than malicious.
Betty
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Sleuth
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Post by Sleuth »

She told me one of her RLS patients printed out postings for her to see.

I can't figure this doctor out. She comes across as caring and concerned when you meet with her and she did get me the appointment with Dr. Earley in Baltimore, but then she seems to disappear when you really need her.

I always had the feeling that was because she didn't have any answers, so made herself unavailable.

Dale

ViewsAskew
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Post by ViewsAskew »

The fascinating book, How Doctors Think, by Jerome Groopman, indeed says that's what doctors may do when they can't help.

*edited because I either can't think or can't type :shock:
Last edited by ViewsAskew on Sat Jan 16, 2010 4:52 am, edited 1 time in total.
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.

Sleuth
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Location: New York City

Post by Sleuth »

ViewsAskew wrote:The fascination book, How Doctors Think, by Jerome Groopman, indeed says that's what doctors may do when they can't help.


She sent the letter with the referrals via FedEx...all very official. Since I live across town, I wondered why the need for FedEx.

In my last email, I mentioned that I didn't think her behavior was very professional. I bet that made her uneasy. Maybe she was afraid I would file a complaint with the AMA. Who knows. After thinking about it, I think the FedEx letter was a CYA move. She mentioned in the letter that I had asked her for referrals. I never did that.

Dale

dogeyed
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Post by dogeyed »

Sleuth,
Did you ever get to a doc and get some medicines?
GG
"It's not how old you are; it's how awful you feel."

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