Dr Buchfuhrer

For everything and anything else not covered in the other RLS sections.
beth
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Dr Buchfuhrer

Post by beth »

Hi
I have been using a Dr in San Diego who is a sleep specialist but I am getting no where.I have been put on every type of dopamine agonist and I feel worse than when I started.I never get to speak to the Dr it is the receptionist relaying info to a nurse practioner and then a nurse to me. I finally made a appt with Dr. Buchfuhrer in Downey.Has anyone used him?
Thanks Beth

ViewsAskew
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Post by ViewsAskew »

Hi Beth,

He is great. Truly. He's very knowledgeable and has a nice manner. He'll also work very hard to help you.

If I were closer, I'd choose him in a minute. He is not my doctor, I've just gotten to know him through Foundation work and helping him a bit when he was writing the first book published with Drs Hening and Kushida.

I know a few people who see him and say the same. I would imagine few people would have a negative perception, but I suppose it's possible.
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.

beth
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Joined: Fri Sep 26, 2008 2:41 am
Location: chula vista, Calif
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Post by beth »

Thanks so much for the info.I have all his books and am just so discouraged with all my past Drs. I started with my GP and then a neurologist and now this sleep Dr which maybe is good but I have a tough form of RLS and I can never see or talk to him.I just can't wait for Nov 3rd to come because i am so tired of not sleeping and feeling sick from the meds. beth

ViewsAskew
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Post by ViewsAskew »

If I had a tough form of RLS, I'd want to see Dr B. As Lynne said in another thread, he's willing to treat RLS with whatever works...not what the docs think is acceptable.
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.

Neco
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Post by Neco »

You can't go wrong with Dr. B

I hope he gets you the correct meds and help you need. Good luck

beth
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Location: chula vista, Calif
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Post by beth »

Hi Zach
Thanks earlier I posted the question about changing Dr and it was because of what you said that made me think to go for it. I have had a call into my Dr for 2 days and no response, I even called back to complain. I just can't wait for Nov 3rd. Beth

Neco
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Post by Neco »

Glad my advice helped you out..

You might want to see if you can make up a list of all the medications you've tried for your RLS, what your dose was, and how long you were on each med too. That way Dr. B can also have a clear picture of your med history and if its in chronological order that might be even better.

beth
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Post by beth »

Thanks for the great idea.At the beginning of this whole Dr experience I started a journal because I am so tired its hard to remember what I have taken and when.I also tape record each visit for the same reason.I know they don't have time to read a journal so I am going to make a condensed time line. Beth

Neco
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Post by Neco »

Good idea, also be sure and list how the meds effected you..

If they made you feel worse, what felt worse, anything that felt better and for how long before it got bad again, etc.

beth
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Post by beth »

I have a question. When you started out with meds did you every have it where nothing worked as far as the dopamine agonists? I am embarrased to keep calling in.I have been on Recuip.Requip xl, mirapex, sinemet,sinimet cr, and now cabergoline. None have worked most have bad it worse but they just keep giving me a new one or doubling the dose and I am worse than when I started.I swear I even purchased a new home thinking totally about RLS . Like a jacuzzi tub, all rooms upstairs so I don't bother anyone etc thats sad. Beth

Neco
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Post by Neco »

Health problems can often influence a lot of purchases, but as long as you can afford it and you are overall happy with your new home I wouldn't dwell on it or worry too much.

When was first diagnosed, it was a little hazy how I fell into my prescriptions. I had received Vicodin as I recall because my mom gave me half of one after some dental worked and I told the doctor how well it let me sleep so he gave me some at that point to help with insomnia, since it has always been a big problem.. But I think in the chart he may have it differently perhaps so nothing looks suspicious and he wanted it to look like I had a much more valid reason..

I know at the point where I was diagnosed with RLS I had come in and mentioned to him that I noticed at times that my leg would start twitching or whatever for no reason and I could stop it conciously but if I chose to let it go it would progress to near thrashing. At that point it was here and there but not every night, and when I took Vicodin it wasn't happening. So he had me lookup Periodic Limb Movement Disorder and Restless Legs.

So for a long time I was being treated with Vicodin, but when I began showing signs of addiction we started trying other medications.. I even went for up to 2 weeks with no meds from time to time to see if I really did have RLS and ambien worked for a week but then quit working no matter how much I took.

I tried Requip 2 or 3 seperate times over the course of a year or two, and I also tried Mirapex later on, but augmented on my first dose real bad. I tried Levodopa and got a few weeks out of it at one point, and that was when I learned about rebound & augmentation (and had to explain/convince him about it) and at one point I printed out the Mayo Clinic Algorithm for RLS and got him to look at it..

So I've tried things intermittently besides opiates but they never really worked for me.. The Algorithm clearly states that if a patient fails 2 or more dopamine agonists then opiates should be considered and are an accepted treatment in patients where addiction isn't a concern.

It also allows you to classify your RLS in severities. I have primary refractory RLS, which is basically when the RLS progresses to a 24/7 condition, doesn't respond to dopaminergics and usually needs to be treated with opiates.

I'm a bit lucky in that I was really able to milk my doctor and stay on opiates in one form or another for several years, but I'm now on Methadone that my dad holds for me because I just lack the self control to manage my own supply.. The methadone has been a great tool, and even though I still have control issues my feelings about my RLS management and in general have improved. I only have to worry about taking one dose a day and I get relief for about 24 full hours.

I've been on all these different meds at one point or another.
Vicodin
Tylenol w/Codeine
Ultram
Oxycodone
Neurontin
Lyrica
Sinemet
Ambien/Lunesta
Requip
Mirapex

Hopefully I will be able to take (and obtain without problems) Methadone for the rest of my life.

Sojourner
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Post by Sojourner »

b, I'm not sure but it may be a bit atypical for one medication or another not to have worked. Having said that it is atypical does not necessarily mean that it is unusual or unheard of--- particularly with respect to those who visit this forum. That is many who find their way here may be those who are more treatment resistive, suffer more side effects, suffer more server symptoms, etc. Another way of putting it is that many who come here are not among the 80% or so of RLS sufferers who respond well to one of the first line meds such as requip or perhaps do not suffer daily, 24/7 rls etc. In many respect many of us here are "unusual." :lol: I think I have seen letters in Dr. B's column stating what I have said-- lack of response is atypical but a little less common or the norm. Still, we are all different. No need to question or doubt your sanity in that respect.

Best wishes,

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

beth
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Post by beth »

Well the Dr finally returned my call after 3 days and I just took the med that I take every 4 days and told me to stop that and go back on requip which I was just on and it didn't work. The nausea with this med takes at least a couple days to slack off. They said to try and get a apptoinment to come back in but it will probably take a while. I am just glad to change Drs. and I hope there is something that works for me. Beth

ViewsAskew
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Post by ViewsAskew »

Wow, amazing that he would do that...did he ever listen to you????
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.

Neco
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Joined: Tue Oct 04, 2005 10:18 am
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Post by Neco »

Wow, what an idiot.. He clearly isn't listening or has no clue whatsoever.

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