looking for a neuro who is open to prescribing opioids to patients in NY state

[Discopage]

After several years on Neupro and Gabapentin I tapered off Neupro but my symptoms persist. Looking for a neuro who prescribes opioids. I’m in NY and haven’t found one here. Called Yale cause I heard Dr Koo sees patients in NY but Yale said that’s incorrect.

[SueJohnson]

Strange! He did do a virtual visit with someone on the forum and prescribed opioids for him. Did you ask about a virtual visit? Or perhaps he would see you if you go there and then advise your local doctor who would do the actual prescribing.

[Discopage in reply to SueJohnson]

I asked about virtual. And my local neuro will not prescribe them which is why I’m looking. He’s not going to prescribe based on another doctor’s guidance. I doubt many doctors would.

[SueJohnson]

Shumbah mentioned Dr Glen Brooks in NYC who prescribed opioids for her although he is not a neurologist. Actual he is an anesthesiologist. You might want to message her to find out more.

[Discopage in reply to SueJohnson]

Tried Brooks when you mentioned it to me before. No luck either. If I remember correctly he has retired.

[SueJohnson]

Here are some names from the Restless Legs Foundation of doctors people have recommended. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists or they might not prescribe opioids . The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read and follow the Mayo Clinic Updated Algorithm on RLS. I have listed them in the order I would suggest you contact them based on what I found out about them.

David J. Dickoff [phone] Yonkers neurologist

Eric Molho [phone] Albany neurologist does telehealth

Jennifer Durphy [phone] Albany neurologist does telehealth

Harini Sarva [phone] New York neurologist

Ana C. Krieger [phone] New York sleep specialist

I would appreciate if you would reply to me if you visit any of them and your experience so I will know whether to recommend them to someone else.

[UsableThought]

Hi Discopage - I have experience with 2 of the NY state doctors on the list posted by Sue.

I live in upstate NY, about an hour below Albany. My RLS specialist is Dr. Jennifer Durphy, who as I say is on that list from the RLS foundation. The phone number for her as given is correct: [phone]. She is part of the Albany Medical practice. I see her in person since I am close, but if she does telehealth, that would be a big advantage if you are located farther away inside NY. Here is her profile page at Albany Med: albanymed.org/physician/jen...

Dr. Durphy treats both Parkinson's and RLS. She is one of the very few doctors in NY state who say that they treat RLS specifically. She is fine with prescribing methadone for RLS, but has stated firmly that she doesn't believe she has the necessary credentials for prescribing buprenorphine. I think she is wrong about that, but when I tried to talk to her about it she got rather uptight. I have the feeling she has a very large case load (many many patients) and gets stressed when asked about expanding her knowledge beyond what she thinks is necessary. I had some tense times with her about this issue, but did my best to repair the relationship, since having a doctor who knows something about RLS (and she does know a good deal) is better than not having such a doctor.

I think Dr. Durphy is generally caring & listens well. However you must be alert with her, as like many doctors, she knows very little about health issues that lie just outside of her speciality. As an example, she increased my methadone dose to help me get off Mirapex entirely, but as the dose went up, I started feeling very unwell. I suspected sleep apnea, but she had no clue. Since I know how to take pulse-oximeter readings overnight, I was able to self-diagnose apnea based on low blood-oxygen levels; this led to my taking a sleep study which confirmed the apnea. My apnea is positional in nature - it occurs when I am on my back - so I use "positional therapy" for it, i.e. training myself to side-sleep. I mention all this because like many doctors, Dr. Durphy knows what she knows but has little interest in learning about closely related fields that she really ought to know about - again, I suspect she just feels overwhelmed by her work load; plus silos of this sort are common in U.S. health care. On the plus side, she is very aware of the problems of augmentation with dopaminergic drugs - in that area, she is by far the best specialist I've worked with over the years. But probably part of this is that the field as a whole has advanced in this area over the past decade or so.

The second doctor I am familar with, from the list that Sue posted, is Dr. Harini Sarva, in NYC; again, the phone number as listed is correct: [phone]. (You start with that phone number but then have to call a different number for "new patients" to get an appointment - that number is [phone], or at least that's what it was last year. But you might want to start with the 746-2584 number first.)

I would recommend Dr. Sarva also, especially if you are in the NYC area. I saw her about 12 years ago when she was a resident training under an RLS specialist whose name I forget, but who didn't impress me at the time. He was trying to see if my augmentation from regular Mirapex could be treated with slow-release Mirapex or else Neupro patches; neither of these worked very well. Dr. Sarva's role was limited to following up with me - again, she was just a resident at that time - but even in this limited role, she was excellent at communicating via email & giving the best advice she could, in between appointments. So I get the impression that she too is generally caring of her patients. I don't know if she prescribes opioids these days but would be very surprised if she didn't. Be aware that she has a VERY long waiting list - last year I had thought about switching from Dr. Durphy to her, and briefly had an appointment many months ahead; but the problem is that the commute to NYC for me would have been very difficult. At the time I didn't even think to ask if she does tele-health. If you are interested in her, here is her profile page: weillcornell.org/harini-sar...

At this point I'm okay with staying with Dr. Durphy, since methadone & buprenorphine are both recommended opioids, and Dr. Durphy is generally up to speed on the state of the art for RLS treatment; there might be some exceptions, but as long as I keep in mind she has her limitations, I'm okay with seeing her.

Good luck. As I say either of these doctors would likely be good, just so long as you be aware that specialists in general are not perfect, any more than any of us are.

- Randy

[Discopage in reply to UsableThought]

Thank you for the detailed info. I’ll contact these doctors. Hoping they accept my Medicare Advantage plan. I’m not thrilled to take an opioid but I have read Gabapentin and an opioid is/can be more effective and lower risk (of augmentation) than taking a DA.

[UsableThought in reply to Discopage]

Oooh, Medicare Advantage - I do hope they do take your plan. I've stuck with "regular Medicare" since far more doctors accept it, I've found. Both the doctors I mentioned take regular Medicare.

[Discopage in reply to UsableThought]

Where I live the Medicare supplement to get an out of pocket max is expensive so for now I’m on an Advantage plan. Comes with some benefits regular Medicare doesn’t offer but like you said some doctors don’t accept the plans.

[SueJohnson in reply to UsableThought]

I really appreciate this information too as I keep track of doctors that are knowledgeable in case someone else needs a recommendation.