Seeing Dr. B

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doety
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Seeing Dr. B

Postby doety » Tue Aug 09, 2011 5:31 pm

Hello:
I've decided to fly to L.A. to see Dr B. I haven't called for an appt yet, but wanted to ask anyone who has been some general questions.

I'm sitting here shaking; I'm not sure why I have this fear. But things are so miserable and I said I'd do anything. I feel a little crazy (maybe a lot) and don't know if I can trust myself to give him good information.. This has been going on for so long and I've taken such awful drugs. I guess I'll start writing down the drugs, etc. so I won't babble.

Should I read Dr. B's book before I go? Would he expect that?
Can anyone tell me about the town he's in? I Googled it and read it's 13 miles southeast of L.A. I assume I should stay there. I'll have to order an oxygen concentrator to be delivered for the night(s) I stay; I'm sure Apria will be able to do that. It's what I did recently when I attended my reunion in Birmingham.

I only know one person in L.A., my daughter's former mother-in-law -- we sometimes email and like each other. She lives on Wellesley Avenue, L.A. 90049....I'm so ignorant about the city. My daughter thinks I should ask if I could stay with her. She also thinks I should see the sights, etc. I've been there several times, just see it has a huge city and driving there scares me (I once was in a traffic jam at 10:30 Friday night...crazy!)

Anyway: Do you know how long it takes to get an appointment. Is there any reason for me to stay longer than overnight? If anyone has a sense for the location, should I get a motel room in Downey?

Any information would be appreciated.

A weird note: My daughter told me a few days ago that her father has RLS and uses a CPAP. He's taking MIrapex and it's starting to augment. I wrote him quickly and told him that I also used a CPAP, used Mirapex at one time, it augmented and the doc put me on Methadone; told him what happened and warned him that he could also get central apnea, given his breathing problems.
My daughter's comment was "I'm screwed." I've always thought she'd probably get RLS, because she was up all night during the last trimester of her pregnancy. She's 43 now and has lots of trouble sleeping. I wish, wish, wish they'd solve this thing before it's full blown in her. But if she has to get it, I can try to guide her in what not to do.

Thanks in advance for any help.

Polar Bear
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Postby Polar Bear » Tue Aug 09, 2011 6:00 pm

Doety - Congratulations - well done on the decision to take positive action.

I'm sorry I can't help you with regard to the appointments or the city but it won't be long until you have some good information from those who would know.

I just wanted to say that you are probably shaking cos you''ve decided to take a bit step... sort of like an adrenaline rush. You will be so proud of yourself.

Hmmm... I'm inclined to babble also, trying to tell everything in a limited time..... so I'm with you on the getting it written down. All the illnesses, symptoms and medications.

Good luck and I can't wait to hear how you get on with your arrangements. This could be the start of a life changing journey. :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Postby ViewsAskew » Tue Aug 09, 2011 10:48 pm

I didn't have to wait long for an appointment - maybe 2-3 weeks?

No need to read the book. He won't expect it.

His office is on the southeastern side, as you noted. I made an 11 AM appt and stayed in Long Beach with my friend. It took me about 35 to 40 minutes to get to Downey and his office.

Your friend is on west side of the city, if Google maps is correct. That would be at least a 45 to 50 minute drive, I'd guess, but could be more in LA traffic (it's farther than I had to drive, but not by much). Still, maybe she would come with you and the two of you could do some sightseeing on the way there or back or both. Downey isn't too far from Disneyland, lol.

I think it would be hard to fly in and out on the same day without getting into evening hours for the flight.

I do like the area and your friend appears to be relatively close to the ocean and Santa Monica. There are some very nice drives along the ocean and it's fund to go the the pier. If it were me, I'd stay for at least a couple days to spend a bit of time hiking in the hills overlooking the canyons or walking by the beach. But, that's me!
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Postby SquirmingSusan » Thu Aug 11, 2011 4:14 am

I love our twice yearly trips to LA. When both kids came with me to see Dr. B, we stayed near Disneyland and got 4 day passes. It's usually my daughter and I who have to see him, so it's usually just the two of us who go to LA. The last couple trips, we spend the first night near Downey, usually in Norwalk which is a couple miles away. After the appointment we find out way over to the coast. We like to stay in the Best Western Sunrise in Redondo Beach. It's right across the street from the marina and there are walkways up to the next couple towns along the beach.

It's true that traffic can be horrendous. Every time I go there I swear that the next time I'm not renting a car and I'm going to take cabs. Now that we're getting familiar with the area, we think that it might be possible to get from Redondo to Dr. B's office by public transportation.

Long Beach is a great place to stay as well, and Dr. B swears that you can get to his office from there in about half an hour. I forget which road he says to take, but I'm sure if you email him, he'll let you know. We stayed in the Residence Inn on the Pier and it was inexpensive and they fed us every night. And walking distance to a lot of the local attractions, like whale watching tours, the Long Beach Aquarium, the Queen Mary, and lots of other waterfront activities and restaurants.

Do get a hold of Julie - fraujoolie (search the forum for her). She checks in here in this discussion board now and again, and she has appointed herself as welcome person for those of us who travel to LA. She's so nice and lives in West LA. You can send her a PM and let her know when you'll be there.

It's amazingly easy to get an appointment with Dr. B. You just need to book it a couple weeks ahead. I always open my browser to Expedia and book the flight at the same time, so I can get the cheapest flights. I just love the area. The weather is always nice, and there is so much to do, or you can just relax by the ocean.
Susan

doety
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Yea~

Postby doety » Thu Aug 11, 2011 2:02 pm

THANK YOU SO MUCH.
That's exactly what I was hoping for -- lots of details and suggestions. I will get in touch with Julie. I'm starting with a blank slate here, and I'm not great on directions, etc. so all this will make my visit much easier.
I know it would be silly to just have the appt and go home; I love the beach, would love water shows, etc. so I'll do my homework and figure some of this out.
My appt is for August 30.
My friend offered her "closet" as she calls it, but I'm thinking that might be more trouble than it's worth and that maybe I should meet her for a meal.

Polar Bear
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Postby Polar Bear » Thu Aug 11, 2011 4:37 pm

How wonderful - seeing Dr B on 30 Aug.
I am so proud of you.
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

ViewsAskew
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Postby ViewsAskew » Thu Aug 11, 2011 5:07 pm

Great news, Doety.
Ann - Take what you need, leave the rest



Managing Your RLS



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doety
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Postby doety » Wed Sep 14, 2011 3:34 am

I only changed the appt two times, but the office staff was very nice about it. I'm glad; feeling more relaxed about it. I'm flying in on Tues Sept. 20, seeing Dr. B that afternoon (afternoon is the time when I have RLS the worst), then staying near the beach in Santa Monica and flying out Friday. That ought to give me time to walk on the beach.

I have to tell you that Julie -- that several people told me about -- was incredible!!! She should be appointed as some sort of ambassador. I hope we'll have coffee when I go out there.

Didn't want you to think I got lost. Will write when I get back and let you know what happens.

badnights
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Postby badnights » Wed Sep 14, 2011 5:53 pm

:) :)
so happy for you, doety. I 'm sure you'll feel a lot better after talking to him, and you'll feel more secure about your treatments for both the apnea and the WED.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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Chipmunk
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Postby Chipmunk » Thu Sep 15, 2011 7:02 pm

That's very exciting!!
Tracy

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Polar Bear
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Postby Polar Bear » Thu Sep 15, 2011 8:45 pm

Can't wait to hear how your visit goes with Dr B.
This is wonderful.
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

doety
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Back

Postby doety » Tue Sep 27, 2011 2:23 am

I went last week, got back Friday night. I've been so tired I could hardly move. But...of course I'm so glad I went. I think the important thing was that Dr. B gave me hope that we can find something that works for me. My last doc (who gave me Methadone) said "we've reached the end with you." He decided I had taken everything he knew about. that was a downer, to say the least.

Dr. B said to substitute Ambian for the clonazepam I've been taking forever. Ann, I think I remember you saying that altho it was easy for you to stop taking Methadone, getting off clonazepam took about a year? Evil little pill. I started doing that two nights ago. First night was hard, second night was much better...we'll see what happens. I had lots of hope this morning, then after lunch I got wretched RLS, leg spasms, so I couldn't sit down at all. After about 3 hours, I had a puff, then took 5 mg Methadone, then after a while another 5 mg. Took two hot showers, did the floor, vacuumed, cleaned almost everything. Damn!! It's 8 now and it's finally gone away and I can sit down.

When I get off the clonazepam, he wants me to try Lyrica instead of Methadone (and he gave me a bunch of samples). He said quite a few people have had success with that. He also told me about interesting drugs coming up in the future....that's also some hope.

I need to send him various things, and I sent off for his book.

I'm really glad I went. I'm also glad I stayed for a few days. Although I didn't like L.A., I stayed in Santa Monica in a place a block from the beach and a block from the Promenade. I actually took the bus -- it was an adventure. I went to the Getty, and was mesmerized by the architecture and the art.

I lost my cell in the LA airport, had a "suspicious" mammogram report when I got back and just about had a heart attack when I looked at my finances....but I'm balling lots of stuff into one giant worry. Now I've got some hope about feeling better and these other things I need to take one at a time.

By the way, Julie was an angel. We e-mailed before I went, she gave me some great recommendations and it felt wonderful knowing I had someone I could call.

Thanks to all for the support.

ViewsAskew
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Postby ViewsAskew » Tue Sep 27, 2011 4:29 am

I was thinking of you last week and hoping for a report soon.

For me, seeing him was all about restoring hope. We tried things...they didn't work, but he'd always have something else to try. He never, ever said that there was nothing left, even when I was down to the second to the last opioid choice (having tried all the rest, having already tried Lyrica and gabapentin, etc.).

It worked. I don't know what he would have done next, but I know he would have thought of something.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Postby badnights » Tue Sep 27, 2011 5:41 am

I'm so glad for you doety! What a difference hope makes.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

doety
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Postby doety » Fri Oct 07, 2011 1:43 am

Yikes.
I was hoping it might be easier than this...the last three nights I feel like I didn't sleep at all. I know that's not quite true, but maybe I got 3 hours? "Woke up" feeling awful. I drove to a park, met a friend and went for a nice walk -- but wonder if I should even be in a car. I'm a crazy person. I continue to lose things (my credit card!!!!!), then spend time trying to find or replace them. Anyway -- you'all know. Sleep deprivation in all its glory.

What I do is walk around. Just walk around. I usually clean. I have tried reading as I walk with not much success.

I called Dr. B and he called me back after hours. He said apparently I got off clonazepam too quickly (although he had a hard time believing that getting off 1/2 a .5 pill would do that....but we know it does!!). So now I'm supposed to add a little dot of clonazepam (1/4 of the .5 pill) to the Ambian. He also said to take 1 1/2 or even 2 of Ambian if I need to. That scares me; I can feel how strong these drugs are. Tonight, I'll do the clonazepam and see what happens. Will let you know.


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