Doctor-Honest Opinion

Post by **ViewsAskew** » Thu Nov 05, 2009 7:45 am

I've suggested to the RLS folks that they remove the referral list. To be put on it, all a doctor has to do is say he or she is willing to see patients. The Foundation doesn't put them there unless the ask, but they do not (and cannot) ensure they really know anything. That would be costly and difficult.

The Foundation tells me that the people who find a doctor who is helpful far outweighs those that end up in Dale's position. But, to me, one person who used that list and had a doctor who did what Dale's doctor did is one too many. It's too hard as it is to go through this, but to have a positive expectation and have this outcome?

It happened to me, too, and it was VERY frustrating to say the least. Similar to Dale, I do not believe that an RLS specialist exists in Chicago. He or she might, but he or she is doing NOTHING to help me find him or her.

The only thing I can think of to do is very costly in terms of my time: to build a support group and groom/train a couple of doctors to be the physicians who speak at the meetings. I really want to do this, but cannot with the other responsibilities I have.

Some day...some day Dale, myself, and everyone else like us will no longer have to go through this. I just hope that day is sooner than I think it will be.

Sleuth · Post by **Sleuth** » Thu Nov 05, 2009 9:15 am

Thank you, Ann. I've been feeling as though my failure to find any help is somehow my fault. BTW, the other doctor I saw was also one I found on the RLS Foundation website. In fact, the two of them were the only doctors listed in NYC as RLS doctors.

I haven't heard anything from the other doctor. I did send her an email apologizing, but she never responded.

Now I am taking no medication for the RLS and have no hope of finding anyone to prescribe anything.

I don't believe Dr. Earley prescribes medication for out-of-state patients. I may write him a letter to find out his feelings about that, though. As nice as he is when you meet him, he is equally abrubt when you speak to him on the phone. He makes you feel as though you're taking up his precious time. It is a very uncomfortable feeling. It's really strange because when you meet with him personally, he is attentive and sympatico.

Dale

Post by **ViewsAskew** » Thu Nov 05, 2009 9:25 am

Some people don't do phone calls very well.

Does Earley have an office assistant/nurse that you could talk to instead?

Sleuth · Post by **Sleuth** » Thu Nov 05, 2009 11:01 am

Ann,

He has a clerical staff. I don't believe any of them do more than take messages and make appointments.

Dale

Neco · Post by **Neco** » Thu Nov 05, 2009 4:37 pm

This isn't going to help you.. But these are the kinds of things that need to be included in letters to state medical boards.

Thing WILL NOT CHANGE FOR US IF WE DO NOT DO THIS..

I really wish you could find a doctor.. I don't know what advice I can give you. I feel so bad for you right now.

dogeyed · Post by **dogeyed** » Fri Nov 06, 2009 12:40 pm

Sleuth,
Here is a website that will give you a long list of docs who treat Restless Legs Syndrome in New York City:

www.healthline.com/doctors/restless-leg ... ?zip=10018

Hope this helps. GG

Sleuth · Post by **Sleuth** » Fri Nov 06, 2009 11:30 pm

Thank you.

Quite honestly, I find it difficult to believe that there are over 500 doctors in New York City who treat RLS. I've asked every doctor I know for a referral, but they did not know of any. These are doctors affiliated with the finest hospitals in the City.

I will check out a few on Monday, but am curious to know how so many got on the list for RLS. Really, I've been looking for over a year and only came up with less than a handful. It just looks fishy.

Dale

Sleuth · Post by **Sleuth** » Sat Nov 07, 2009 11:00 am

dogeyed wrote:Sleuth,
Here is a website that will give you a long list of docs who treat Restless Legs Syndrome in New York City:

www.healthline.com/doctors/restless-leg ... ?zip=10018

Hope this helps. GG

How did you do that search. Over 4000 doctors in NYC that treat RLS is unrealistic. If I know how you did the search, I might be able to narrow it down. BTW, that seach is only for one zip code.

Thanks,

Dale

dogeyed · Post by **dogeyed** » Sat Nov 07, 2009 11:31 am

Hi Sleuth,
To answer you, I just went to the main website ending .com and then I chose "find a doctor" in "NYC," and it took me to a page that lets you modify the search like you want. I modified search by typing in the "condition" of RLS. I kept the miles from downtown where it was set (within five miles).

But one way to lower the number of docs that come up (I know, it's ridiculous how many), is you'll notice in the menu along the left side, that it automatically checks neurologists and internists. You can delete either one of those (try just internists, and alternatively try just neurologists), and it'll cut the list. Could be an internal medicine doc might be a new way to go. I live in a medium-sized city and it was my family doc who pegged me for RLS right off the bat and gave me codeine, then referred me to a neurologist who tried all four categories of medicines on me, and we wound up sticking with the codeine, my neuro has been prescribing it for years. Also, I think you've already done this, but a pain clinic would probably help you.

Also, you could only choose to call those docs in the giant list who graduated from college in this decade (altho I don't think they have a section to narrow the list that way) so they'll be more likely to know about RLS. Also, pay attention to the phone numbers, some docs have the same phone, so it's a group, which is good. For example, seems like I remember there were a slew of the same 800 phones, they're associated with a hospital.

Maybe if you used a different zip code, for a borough that has less population, or change zip to YOUR exact zip, you might get a smaller list. But in the end, you could print out the whole list and just start calling, check off the ones you call, and keep going. I came across the website when I did a general google search for neuros in NYC who treated RLS. I have no idea if it's reliable or whatever.
GG

Sleuth · Post by **Sleuth** » Sat Nov 07, 2009 1:33 pm

Thanks, I did narrow it to neurologists. I got over 400. I know some of them are affiliated with hospital groups I've been to. Many are graduates of schools in foreign countries with addresses in out-of-the way places. I honestly don't know how to hone the list down to something that is manageable. If I call up, they'll all say they do handle RLS. That is what happened with the last doctor. Then you go there and they don't know shinola.

I don't mean to sound so negative, but I can't help it right now.

I will figure something out.

Thanks for taking all that time. I appreciate it.

Dale

Post by **ViewsAskew** » Sat Nov 07, 2009 7:20 pm

Dale, I did something similar a few years ago. Then I called every one of them. Talked to the nurses to find out what they thought. It really helped me narrow it down. I was very careful not to sound like I was drug seeking, but who know how they heard me.

Sleuth · Post by **Sleuth** » Sun Nov 08, 2009 4:28 am

Dd you find a doctor doing that?

Good luck in CA!!!!

Dale

Sleuth · Post by **Sleuth** » Mon Nov 09, 2009 11:42 am

I just got my weekend mail. The doctor I was seeing sent me a copy of my records. There was no cover letter...nothing but a copy of the records.

SHE DID NOT INCLUDE DR. EARLEY'S REPORT.

I am in a state of shock. How could a doctor who was so nice and accommodating just turn me off like that. When I first started seeing her, I didn't think she handled a situation correctly so I sent her a letter telling her how I felt in a nice and professional way. She emailed me apologizing up the whazoo and pleading with me to come back to see her.

I would love to know what happened.

Dale

Neco · Post by **Neco** » Mon Nov 09, 2009 4:01 pm

Just call her office and politely state that you received your records and you are missing a crucial report that is from Dr. Early, and request that they send it to you.

Alternatively, call Dr. Early's people and let them know what happened, and ask if they have a copy they can send you. (I would think they would have a copy?)

Post by **ViewsAskew** » Wed Nov 11, 2009 9:06 am

Sleuth wrote:Dd you find a doctor doing that?

Good luck in CA!!!!

Dale

Yes....and no.

I narrowed it down to three or four. The one wasn't willing to work with opiods, another wasn't willing to work with opioids, and another wasn't willing to work with opioids....

One of them was really great. I liked her tremendously. She just wouldn't help me in the way I needed help.

The nurses information was excellent and it helped me a lot. I didn't know what I know now, so didn't ask some questions I'd ask if I was doing it today. I certainly helped me keep from seeing the obvious misfits and I got closer than I would have without doing it. Since I didn't ask about opiates at the time, if I'd asked that, I'd have had better info and would have kept looking.