Uninformed Doctors

[madash1014]

Good morning all! I'm new to the foundation but excited to have found it after a very frustrating experience with my Dr. yesterday. I have been diagonsed with RLS for about ten years after having a sleep study done. I originally was prescribed cinamet (sp?) but it became ineffective have a period of time. I was changed to requip and loved it for the first couple of years. but again it seems to be losing its effectivness. my symptoms are appearing earlier and earlier. I dread afternoon meetings because I can hardly keep my legs still. I thrash around so much at night that I shread my sheets about every three months and have to replace them. My poor husband is about ready to start sleeping in the guest room just to get a good nights sleep because I keep him up everynight. My Dr recently retired and I went to my new Dr. yesterday to see if there is anything new I can take or perhaps change my requip dosage although it already makes me nausiated at the dosage I'm taking. She told me that if I knew anything about RLS I would know that it is a sleep disorder and if it bothers me while I'm awake, its not RLS. I should do leg stretches before bed and should be fine. She would not even refil my Rx for requip because she doesn't think I have RLS and my previous Dr just put it in my head. I left in tears because I am absolutely miserable and my Dr just blew me off and acted like I am crazy. I'm so tired of uninformed Dr's. So I am on a quest to find a new one. Any advise on how to find one that actually knows something about RLS? Im bound by the Dr's included in my insurance plan.

[Neco]

First off,

That is disgusting treatment, and outright irresponsible. One of the first calls you should make is to your insurance provider to COMPLAIN. Ask them if they can recommend another doctor for you to see, or better yet try to get them to make an inquiry on your behalf and set up an appointment with a new doctor.

If it behooves you, call the state medical board and complain to them, very loudly and very angrily as well. You may have to go to an E.R / Urgent Care in the meantime until you can find a doctor.

When you go to E.R/Urgent care bring any medical records you can get your hands on, or anything that can show you have been filling prescriptions for your RLS meds at a pharmacy.

Secondly, what you are experiencing is called augmentation. Sometimes it can be controlled by increasing your dose, or taking multiple doses to "cover" the augmentation. If that doesn't help, then you are really screwed because you have to try finding another medication that works... There is Neurontin or Lyrica, or Clonazepam (which doesn't really help your RLS but helps you sleep through it). And of course the single most effective treatment - opiates, which can be hell to get from a doctor unfortunately. If you have to stop Requip it is going to be very hard for a few weeks, and finding a doctor who is sympathetic enough to prescribe opiates during this period is the best thing you can do to help yourself through it. The Algorithm recommends opiates for patients stopping DA's because of the increased RLS they will go through as a result.


PLEASE read the Mayo Algorithm for RLS, the link is in my signature below. It specifically addresses augmentation and what to do to fix it, alternative meds, and when opiates are appropriate and should not be withheld if needed. (If you go to E.R/Urgent Care, take the Algorithm with you, print it out and give a copy to any doctor who sees you in the future)

I'm sorry you had to go through that, obviously this doctor is a clown and doesn't understand the concept of actually researching something before talking about it.

You are in a position where if you back down, you WILL lose. So please don't give up. Annoy as many people as you can, because that is the only way things ever get done for us

[Polar Bear]

What disgraceful behaviour by a doctor !! And what a horrible position to put you into from a medical and (lack of) treatment situation.

If you are going to look for another doctor anyway, do you have anything to lose in the meantime by going back to this doctor taking with you a copy of the Mayo Algorithm, and asking that the matter be discussed with a view to relief for your symptoms, regardless of what her personal views are. Perhaps taking your husband with you for support.

If doc has any wit at all she will pay some heed to the Algorithm, and know she has nothing to lose (except a patient) by following its guidelines.

Perhaps I am being niave.

The fact that this doc was talking such rubbish and not taking your symptoms on board as meriting her attention does not show an attitude that bodes well in any situation or for any of her patients.

What about an email to Dr B. with regard to your symptoms/medications and asking for his advice, to show his reply to her along with the algorithm. He usually repleis in a day or so. But obviously not saying in your email anything about how rubbish your doc is, that she might see, or that Dr B might refer to.

[Aiken]

Report your doctor to whatever board certified them.

What they did is literally malpractice. I'm not exaggerating or joking.

[ViewsAskew]

Ditto.

That was unconscionable. Truly.

You know, I understand not knowing everything. I don't understand arrogance. I don't understand a complete inability to think past yourself and about others.

I can't believe she did that. I read this last night and couldn't respond because it made me too upset.

I am so sorry you had to go through that. I hope you have better luck soon.

[madash1014]

Thank you, everybody for your responses. I'm so glad I found this site. I have suffered so long alone. Its been incredible reading all of the posts and learning that so many are out there experiencing the very same thing that I am. Not that I take joy in others suffering, but its nice to know I'm not alone. Thank you Zach for the algorithm. I was fasinated by it. Your advice was priceless. Polar Bear, I'm new to this, so I am not aware of who Dr. B is. Can you give me more information? I can't tell you how much everyone's support means to me.

An update. I did call my insurance provider to complain (i'm not sure that will do any good) but they did refer me to a neurologist with a subspecialty in sleep disorders and a lot of experience studying and treating RLS. I could not get an appt until Septemeber, but I am very much looking forward to it. I also called the clinic director where my horrible Dr works and I will be getting enough refills of my requip to get me through Sept. until my appt. The clinic director didn't have much to say about my complaint but was willing to give me a limited amount of refills so I'm taking that as a victory. I unfortunately have another appt with her in two weeks to follow-up on some blood work she did, but I'm going to take the algorithm and my husband with me. I'm also gathering all the studies I can come up with and am going to send them to her. My hope is to bombard her with so much literature on a regular basis that she will either become an expert or will be very annoyed. Either way I'll feel vindicated... but really, I wont be going back after my follow-up appt but I don't want the next person with RLS to end up with an appt with her and go through the same treatment I did, so I will continue to send her literature. It might go in the trash but at least she will have it in the forefront of her mind for at least the time it takes her to put it in the trash.

Thanks again to everyone. I will be a regular on the discussion board. I absolutely love it! I'm looking foreward to interacting with all of you!

[Neco]

Glad you were able to get your refills, and yes that is very much a victory. Hopefully your new doc will be better - some people have very good luck with Neurologists.

[Polar Bear]

Dr B is Dr Buchfuhrer who answers emails on the rlshelp.org site. He is an rls expert at the Mayo Clinic and a co-author of the Mayo Clinic RLS Algorithm.

If you go to rlshelp.org there is lots of info, hundreds of letters to which he has responded, and if you email him he will respond to you.

Good luck.

[Betty/WV]

Hi: I to was very upset by what your doctor did to you. I too had a similar experience, as I'm sure many RLSers have. I left my doctors office feeling very humiliated and speechless. I went home and copied many articles that I had read, (this was before I became familiar with this site, and didn't know to much about rls.) These articles were about RLS and clinics (like Mayo CLinic, etc.) and doctors doing research on RLS. I sent them to this doctor and a note telling him how unprofessional he was and how rude he was to me. And I marked on the enevelope "PERSONAL". So he would be sure to get it and not some secretary.
I waited for a reply!!!! But didn't really expect to get one. Weeks later, I received a letter, with his letter head. Inside, was my check that I had paid him, marked void. No note of apology, just the check. But I felt vindicated also.
Wishing you the best, don't give up.
BETTY/WV

[Neco]

I thought Dr.B was in southern California ? I didn't think he worked for Mayo either..

Just checking?

[Polar Bear]

Zach, I am sure that you are correct. What with the Mayo Clinic Algorithm - I assumed - incorrectly.

[ViewsAskew]

Per Dr B, he is in Southern Cal. But, he did work on the Mayo's Algorithm. As I understand it, it was many of the docs on the Foundation's advisory board who did it together, under Mayo's name. So, right in a way.

Maddash, you go! Good for you. Too many times we let these things go. Doctors don't "learn" based on free market economics because of how insurance works. So, we can't just leave their practice and hope they figure it out. But, it's hard to stand up to them. We figure who are we to tell them?

Well, we're the person paying for the service!

Per the info, I bet you're already doing this, but there are soooooo many great pieces of info both here and on the RLS Foundation's main site. If you go there, find the pamplets and print out the ones that are appropriate to you.

Here, try reading the "stickies" in each section. You may already have, but in case you haven't found them, these will link you to hundreds of great articles and documents you can print. I normally only take my doc 1 or 2 at a time, but her? I'd give her 500 if I could....

[Aiken]

Inside, was my check that I had paid him, marked void. No note of apology, just the check.

That's probably the best you could get. I doubt his lawyers would let him say, "Oops, yeah, I was wrong and you were right, sorry," out of fear of a malpractice lawsuit. I'm surprised you even got that much.

[ViewsAskew]

There was a study done a few years ago that showed that people were much less likely to sue if the doctor said, "I am sorry."

That's all most of us want to hear. We get that people make mistakes. We get that things go wrong. We don't like it, but we get it. What we don't get is when people won't say it. Which is why we sue. But, don't ask me about my feelings about the legal system and lawsuits....if I get started I might not start typing for a week!

[Neco]

Blame lawyers. They are just stupid.

One of the first thing they would likely tell a new client doctor is to NEVER say sorry, or anything else than could be construed as an admission of guilt in making a mistake.


So yeah.. they don't apologize, and people sue anyway. Go figure.