Doctor-Honest Opinion

For everything and anything else not covered in the other WED/RLS sections.
Sleuth
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Doctor-Honest Opinion

Postby Sleuth » Fri Oct 30, 2009 6:02 am

I have to find a new doctor for my RLS.

I have been seeing this one doctor since May of this year. During that time, she prescribed two medications, each of which I took for a few days and had to stop.

To begin with, she had me meet with an associate psychiatrist, which took weeks to get an appointment.

She had me take a series of blood tests and prescribed iron pills because my iron was drastically low. She also spent a lot of time finding the right multi-vitamin for me.

She tried to find someone to give me an iron transfusion in New York, but could not.

She arranged for me to meet with Dr. Earley at Johns Hopkins and have the transfusion done by one of his associates. That was in early July. Dr. Earley asked me to call him in August, which I did. There was nothing more he could do for me and early August was the last time I spoke with him.

During the 2-month period since then, I met with her once two weeks ago when she prescribed Mirapex. I took that for one week and had to stop because of bad side effects.

When I stopped the Mirapex, I emailed her several times. She answered all emails with more questions, which I answered. I wanted to take another medicine, but she never answered my last two emails sent over two days. She also did not return my phone call of yesterday.

Yesterday evening I emailed her saying that I could only assume she did not want to treat me anymore. I asked her to send me my files and that I would look for another doctor.

She replied that she didn't have the time to answer all emails or calls on a day-to-day basis. I found this strange because, prior to this, she would answer all my emails. She even emailed me on weekends from her Blackberry.

I have this funny feeling that she doesn't know what medicine to prescribe so was just ignoring me.

In any event, I am dreadully upset. The thought of looking for another doctor....again....does not give me a good feeling. I now am taking absolutely nothing for my RLS. When you think about it, ever since I started seeing her over 5 months ago, I have been on medication for a total for 2 weeks.

Am I being unreasonable? Please be honest. As you know I'm depressed which makes it hard to be rational.

Thanks,

Dale

runkrun
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Postby runkrun » Fri Oct 30, 2009 10:18 am

Sleuth, Sorry to hear your RLS is out of control with no medication backup. When you saw Dr E. in July did he suggest a plan B or C if your Mirapex was'nt effective? For instance,Neurontin,Lyrica, maybe an opiate? If not will your current physician take Mayo's algo suggestions? As for your current physician answering your emails and phone calls, you were very lucky to get as many reponses as you did. Most physician are way too busy to call patients back more than once or twice.(believe me I work in the medical field) If your current physician is open for suggestions regarding your meds , schedule another appt. to see her and get some meds for relief as soon as possible. When I was going through augmentation this summer, I was in the doctors office twice a week until I got the proper medications. Forget the phone calls unless it's to schedule an appt. Can you see Dr. Early again?

Polar Bear
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Postby Polar Bear » Fri Oct 30, 2009 10:22 am

Sorry things are so bad. I agree with runkrun, I think you need to be face-to-face with doc to make doc see you mean business. i.e. This needs sorted!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sleuth
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Location: New York City

Postby Sleuth » Fri Oct 30, 2009 10:30 am

Dr. Earley suggested two opiates. I wanted to give a non-opiate another try before committing to the opiates.

I guess this doctor spoiled me by answering all my emails. Then when she stopped, I thought something was wrong.

I really don't know how to make it right with her again. After asking her to send me my records. She told me she left a message on my answering machine, but my machine cut her off after she said hello so I have no idea what she said. I imagine it was what she said in her email.

If don't know what seeing Dr. Earley again will go. He's in Baltimore and I understand it takes months to get an appointment. I live in NYC. I need a doctor here to monitor my meds.

Dale

Sleuth
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Postby Sleuth » Fri Oct 30, 2009 10:33 am

This was her email:

please note that I do not have uninterrupted access to e-mail and reply to calls and e-mails as soon as possible.

I left a message on your phone this afternoon and will ask Yvette to prepare a copy of your records to be sent to your home so you could proceed as you wish.

Best regards,

AK


Should I apologize? You just can't call up and go see her in a day or two. It usually takes at least 1-2 weeks for an appointment.

Dale

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SquirmingSusan
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Postby SquirmingSusan » Fri Oct 30, 2009 11:56 am

Will she prescribe the two opiates that Dr. Earley recommended?
Susan

dogeyed
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Postby dogeyed » Fri Oct 30, 2009 12:45 pm

Hi Sleuth,
I think you should see a neurologist in NYC. Once you explain to the doc how Mirapex and other drugs have not helped your RLS, tell him you have friends who have RLS and that say codeine-type drugs are supposed to make the pain and RLS go away, and so does the literature about RLS. Tell him you're just sick of trying this and that, and your legs are driving you nuts, and you need someone who will take care of you properly. Say nothing else about it, just leave it right there.

He might want to prescribe yet other meds initially, because many docs do not like to prescribe controlled substances. But in time, and maybe even at the initial appointment, he'll give you the opiates. Nearly everyone who takes them find heaven-sent relief overnight, and in addition, while addiction problems may become an issue, as long as you pay attention to that, you will find you can stay on the same dose for years before needing more.

Try to find a group practice of neurologists in NYC, and if you can locate a webpage on them, see if any of them specialize in RLS, or do a general search for neurologists that specialize in RLS that are in NYC.

I've been offline for a while, our machine crashed and then health issues kept me away, but I tried to catch up on you by reading your recent posts. It sounded like you were also taking some other medicine for other medical problems, but that you are not seeing that doc anymore. So, I'd like to suggest you could go to a regular health clinic to get those medicines or find a private group of family docs. Also, if you need a referral to a neurologist, the same health clinic or family docs can refer you to one. I hope this helps you in your quest to get settled down with the right medicines for all this misery you're having to put up with.

It's hard to get docs lined up. It took me years to straighten out my list of docs and medicines. And even then, sometimes things go wrong, and I have to wrestle with it some more. But I think if you'll use a NYC neurologist to get your RLS medicines straight, the rest will be easier.
GG
"It's not how old you are; it's how awful you feel."

Sleuth
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Location: New York City

Postby Sleuth » Fri Oct 30, 2009 1:31 pm

There are very few doctors in NYC who treat RLS. I've been looking for a year. I've asked my internist and every other doctor I see if they know anybody. Nobody does.

I know it sounds strange, but that is how it is here.

I was taking anti-depressants, which I stopped because I wanted to leave a clear space for the RLS drugs.

Dale

Sleuth
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Postby Sleuth » Fri Oct 30, 2009 1:31 pm

SquirmingSusan wrote:Will she prescribe the two opiates that Dr. Earley recommended?


I think so. When we first met, she didn't seem to have a problem prescribing opiates.

Dale

Wayne
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Postby Wayne » Fri Oct 30, 2009 7:30 pm

I agree that you were fortunate to get a returned call or email from the doctor at all, rather than their nurse/assistant. It is also somewhat suspicious that it suddenly stopped. I think you're correct in assuming she doesn't know what to do next. As others have said always go face to face if possible, they can't avoid you then.

Most doctor's offices do walk-ins. Meaning you just show up and sign in and they will work you into the schedule. There are always cancellations or no-shows in the appointment schedule. I've done this a couple times with my GP.

Sleuth
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Location: New York City

Postby Sleuth » Fri Oct 30, 2009 8:12 pm

I can't just walk in on this doctor. This is a large hospital, not a private doctor's office.

Now I'm wondering if she ever intended to give me the opiates. She mentioned Dr. Earley had recommended two different ones, but made no move to prescribe them.

I did send her a short email apologizing, but haven't heard back from her. I have a feeling I never will again.

Dale

Polar Bear
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Postby Polar Bear » Fri Oct 30, 2009 10:19 pm

Hopefully you will hear back from her soon, and save you from a weekend of worrying about it.

In the meantime, remember you are the patient and you deserve treatment for your symptoms.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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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SquirmingSusan
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Postby SquirmingSusan » Fri Oct 30, 2009 10:27 pm

If it were me, I would call or email her with one question - Will you prescribe the medications that Dr. Earley recommended? Apologize if you must, but be clear that you need those medications, and that one of the foremost experts in the country recommended them, and you would like a prescription now. You need relief.

If she is so afraid of controlled substances that she won't prescribe them, then you need a different doctor. And if her ego is so big that she won't take an expert's recommendation, then you need a new doctor.

But who knows, maybe she'll come through if you're clear that you want to try those meds. In your posts here in the forum, I keep reading that you don't really want to try them, so maybe she's gotten that message as well. Be clear with her that you want relief and that you will follow the recommendations of Dr. Earley to get relief.
Susan

D4
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Postby D4 » Thu Nov 05, 2009 1:59 am

Why don't you call Dr. Early's office and ask him to write a prescription for you?

My Mayo Clinic neurologist will write prescriptions for me as long as I have seen him within the last year. I just call his office and communicate with a nurse who checks with him.

Sleuth
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Location: New York City

Postby Sleuth » Thu Nov 05, 2009 6:07 am

I went to see another alleged RLS doctor. I found her name through the RLS website. She knew diddley about RLS. Apparently she had worked with a few other doctors in writing some sort of paper on RLS. The RLS organization saw that and included her name as a referral on their website.

She never heard of Dr. Earley. When I told her I went to see him to have an iron transfusion, she got all excited. She said, "aha, that is the cause of your RLS." When I told her that the transfusion only worked for a few weeks and that my iron levels were normal, she went back to her computer. Oh, the whole time, she was doing searches on her computer.

I then asked her if she would prescribe opiates. She said she would not because of her fear of addiction. I then stood up and said I was sorry but I didn't see any need to go on. She was upset because she wanted to examine me. I asked her what was the point? I know I have RLS, so what is her examination going to accomplish. I then left.

I am now back to having no RLS doctor and no hopes of finding another one. I have exhausted the few supposed RLS experts in NYC. Quite honestly, there are none here.

Dale


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