PA RLS Sufferers

[sarahjj]

Hello Friends

Its been quite awhile since I've been around these boards. I got so disgusted with this ridiculous RLS that I didn't want to talk about it. I'm so glad to be back and catching up with what's going on. Its been a tough year so here's what I'm up to.

After a ton of research and phone interviews with several doctor offices, I scored an appointment with a neurologist/sleep doctor near Philly named June Frye. From my research and interview, I have learned that she typically treats RLS patients with severe symptoms, has written over 40 articles for the medical journals and has been part of a team conducting five different RLS studies. This all makes me think she has some credibility. If its true, then she will be the first doctor I have been to who has some kind of clue about how to treat severe 24/7 RLS. It is a 2 hour ride one way for me to get to her....trust me, it will be a grueling 2 hour ride....so I am truly praying that she can offer me some information, options, maybe even solutions.

Have any of you ever heard of this doctor or had any experiences with her? I will be sure to update you after my appointment tomorrow. Wish me luck!

[ViewsAskew]

I sure get the disgusted part! Glad you are back, though.

I haven't heard of her. She sounds perfect...hope it turns out that she is.

[Polar Bear]

Nice to hear from you again.

I live in the UK and no nothing of rls experts in the US. Actually I've never even heard of an rls expert here in the UK.

If your neurologist/sleep doctor is able to help you then the 4hour round trip will be worth it. Good luck.

[SquirmingSusan]

Good luck! I hope she turns out to be competent and caring and willing to do what it takes to treat your RLS.

[sarahjj]

Well, I am full of grins!

I went to see Dr. Frye on Tuesday February 15th. She spent over an hour with me. Because I called and interviewed the nurse over the phone before I made an appointment (highly recommended if you are looking for a new doctor), Dr. Frye was well aware of my concerns when I went in. She had an excellent bedside manner. Her attitude seemed to be that if I thought something was worth saying, then it was worth her time to listen and write it down. Her Physician's Assistant, Kathy, spent the time with us as well. The two of them as a team were excellent. They both were extremely knowledgable of RLS, how to treat it and the insanity RLS sufferers go through. When she got the full picture of me, she said that I am one of the worse cases she's seen, but that she has treated a couple others like me and feels confident she can help me.

Dr. Frye has been part of many clinical trials for RLS and has written over 40 articles for the medical journals on RLS. Her knowledge, expertise and compassion is beyond what I was hoping for.

Together we worked out 3 different plans of treatment. I am a goal oriented person so I need to know that she is in agreement with me for the end result and the timing for that end result. Turns out, she is. If plan A does not work within a specified period of time, we turn to plan B, and so on.

Now, this next part is my favorite part. I told her that I was going on a trip a couple days later that would involve 2 two hour car rides and 2 three hour plane rides. She asked me how I was planning on getting through that and I answered that I planned to pop pills until I couldn't feel anything anymore. (I was kidding, but she got my point). So she suggested we put together a travel plan to help me get through the trip. Her philosophy is to pre-treat when you can predict trouble. She set up a schedule for med dosing that would get me to my destination comfortably, yet still alert enough to function and make connections, etc. I was doubtful that it would work. But I figured she took the time to help me figure it out, maybe she knows what she's doing. Well, the trip went wonderfully. I dosed exactly as she suggested and I had NOT ONE PROBLEM the entire trip! This is UNHEARD OF for me. And when I arrived at my final destination, I was still coherant enough to talk, eat a meal and be social before I went to bed.

After this travel experience, I have confidence in Dr. Frye and am excited to work with her in licking this freakin' ridiculous RLS crap. I know we are not curing it, but if I can have a normal life again, OMG I would be so thrilled.

Anyone who lives on the East side of PA that suffers from RLS ~ Dr. Frye is worth a visit. I cannot thank her enough for giving me the hope I've been searching for for way too long.

My prayer is that this post is helpful to someone else out there who is suffering with RLS. We all need hope and I pray that each and every one of us finds it. Because this RLS stuff really sucks.

[badnights]

Thank you so much for this post. I don't live anywhere near and will never be able to avail myself of her services, but it was so uplifting to hear. thanks.

[Polar Bear]

Sarah - this is wonderful.
it's great to hear of a good outcome.

[Betty/WV]

I am so happy for you. It would be nice (but unlikely) that all RLSers could find such a doctor. But maybe more will be coming along as more is known about RLS.

Where in Pa. is Dr. Frye? I am probably a few hundred miles from that area, I am in West Virginia. But if I have no other option, I may have to make the trip.

BETTY/WV

[Polar Bear]

One of the good things about this discussion board is that when one of us has had a success with a doctor, has tried something that has helped, they share it with all of us.

We in turn can consider the information and possibly in turn discuss it with our own doctor.

So...... in theory.......... if one of us has access to a great rls doctor it is possible that some of the knowledge of the great rls doctor may eventually (via ourselves) reach our own GP and then further reach the GPs other rls patients.

[sleepdancer]

How encouraging to read your report on your visit with Dr. Frye! It's good to know there are doctors out there who really "get it". May this be just the beginning of good things for you!

[sarahjj]

Thanks everyone. @PolarBear - that is exactly why I am posting this. I just hope some of you can benefit from what happened with me. But please remember, this was just my first visit. I'm thrilled so far, but I need to see her in action to make sure she lives up to her promises.

@Betty - Dr. Frye is located in Langhorne, PA which is just north of Philly. She would be a ride for you for sure.

Maybe this will be helpful to some of you. What I did to find a doctor was to go onto the RLS.org website and look under "Find a doctor". I researched EVERY doctor that was listed on that site in PA and NJ. After researching those doctors online, I narrowed it down to 3 doctors. I called each of those three doctor's offices and asked to speak with the nurse. I told the nurse that I am an RLS patient looking for a doctor who can treat me. But before I make an appointment, I need to ask a few questions. I cannot afford to make the trip only to find out that the doctor cannot help me. Then I asked the nurse these questions:

1. Does the doctor currently treat any patients with severe RLS symptoms and/or 24/7 symptoms. If so, about how many patients are currently being treated in the practice for severe RLS.

2. Does the doctor prescribe Methodone as a treatment for RLS?

3. If the doctor's office is a distance away, is the doctor willing to work over the phone and/or email to save me from traveling for office visits to adjust meds.

The way the nurse answered these questions helped me decide who to go see. This is a bit of a different approach because it puts the patient in charge. Doctor's offices are not used to doing that. However, that interview worked to my benefit when I went in for my visit because I was taken very seriously. I really believe that we, as patients, need to take a more proactive approach to our medical care. So , that's what I did.

[SquirmingSusan]

Thanks for posting this information, Sarah. I like the questions you asked of the nurses. There might be some nurses who don't answer truthfully, but it sounds like this worked well for you. It's so great to hear that the doctor turned out to be competent and really know something about RLS. And it sounds like she's willing to work with you to get your RLS under control.

[ViewsAskew]

I asked similar questions several years ago. I had a list of 31 doctors who said they treated RLS and were in my insurance plan.

The nurses, in most cases, were incredibly helpful. I highly recommend doing this if you don't have any information to go on. It didn't end up working out well for me, but that's not because the process wasn't helpful.