Dr Winkleman Dr Buchfuhrer - Restless Legs Syn...

Restless Legs Syndrome
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Dr Winkleman Dr Buchfuhrer

Shumbah
Shumbah
21 Replies

Hi Restless Team

Just wondering what the difference in care is between the 2 specialist Dr Winkleman and Dr Buchfuhrer.

We are on route to NYC and hoping to get appointment with Dr Winkelman in Boston .

I have sent all my paper work but still awaiting contact from liaison officer .

If he cannot we see me we will come back and choose the better of the 2 .

Just wondering are they both good and caring ?

I have just got out of Private hospital this week in Australia and the the doctor really abused me for using opioids .He refused to treat me although I was there for something unrelated.

Said the once a 15 mg oxycodone would be masking the pain I was a 9/10 pain score so not sure how he worked that out . Then increased my oxy to 20my and said why don’t you go back to the John Hopkins and get them to run you tests turned and left the room .Never saw him again .

I think it was rude to step in and increase my medication when it was nothing to do with him

Now I am the international airport and will have no choice but to take it. I have 5 mg quick acting to take for plane , the theatre’s etc

Ps I never told him about John Hopkins institute visit May must have read it in my file .

I was not in hospital to discuss RSL or my RSL meds

Treated my like a junky

21 Replies
oldestnewest

Hi,

I’m so sorry you were treated this way. Unfortunately I understand all too well. This is a horrible time in the U.S. for getting opioids, especially from doctors who have zero understanding of RLS or opioid use in its treatment. Awhile ago, out of complete desperation I wrote to both Dr. Buchfurher and Dr. Winkleman. Dr. Buchfurher responded twice to email questions very, very promptly and kindly. Nice man. Dr. Winklan actually called me personally himself, which I most unfortunately missed the call but he couldn’t have been nicer. I personally would put my life into either of their hands and would have done so had I not been lucky enough to find a Dr. Berkowski here at the University of Michigan who trained for his Fellowship under Dr. Buchfurher and while he is a two hour one way drive for me he is at least in my same state and as an extra bonus just setup to start doing virtual visits, which I’m very excited about and have my first one in about 2 1/2 weeks. He is awesome despite the fact that the supposed “sleep specialist” that is also from U of M and treated me before him and promised she was going to get me back on the only drug that has worked for my refractory RLS but instead cost us a lot of heartache, suffering, a lot of money, and basically tried to kill me by abruptly stopping the ridiculous dose of 8 mg of Requip cold turkey, absolutely NO tapering, with no supportive therapy, was awful. I could just hug Dr. Berkowski! That said if you’re deciding between Dr. Buchfurher and Dr. Winkleman they are both very supportive of the need for appropriate treatment and are caring. Like I said, despite how incredibly busy they must be, they both personally got back to me very quickly. If I can be of any further help just message by replying back to this or you can also private message.

All the very best to you! I hope someone who has seen these doctors gets back to you. I think these doctors are the kind of heroes we really should have because they are awesome and doing everything they can to help us.

Big hug,

Sus

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sweetiepye

Hi , I just want to let you know I have seen Dr. Berkowski . He is impressive and it was such a relief to speak to someone who knew exactly what I was talking about. Unfortunately I have to have a sleep study done because of asthma so I cannot get started with withdrawal until first of Dec. I hope this is the last long wait I have. I am so grateful to you for the help you have given me, and glad to hear you are getting back to where you want to be. Pam

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Not-methadone-addict

Oh Pam,

Thank you! I’m so glad I could be of some help to someone else. That makes me feel so good and so happy. I hope this is your last long wait too! My thoughts are so very much with you. It can seem like a lifetime waiting. And you’re so right, to have that doctor who doesn’t look at you like your crazy or doesn’t get what you’re saying but understands completely means everything. It’s such a relief. I’m not sure what he’d think but I could just hug him sometimes! Maybe then he’d have to rethink the crazy 😜 part 🙂! Right now I could just hug you too! What an awesome start to the day! I really hope you can keep us up to date on how things are going once your sleep study is done and things get moving. I can’t wait for you to be exactly where you want to be! Keep me posted.

Love and a gigantic hug 🤗 to you,

Sus

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Shumbah

Hi Sus

Thankyou thankyou thankyou

For taking the time out to respond

Just landed at JFK 24 hours long hall from Australia done 🙂

I have not heard from liaison officer for Dr Winkleman

I was wondering if you have an email and phone number I can contact him on Monday

to hopefully to see him or speak whilst on same Timezone

Truly appreciate your help big hugs to you .

😊Kester and my husband we both do .

It has such toll on both parties 🌸

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Not-methadone-addict

Sorry not to have seen this earlier. Here are the two locations he’s at.

Sleep Disorders Clinical Research Program

One Bowdoin Square

9th floor

Boston, MA 02114-2790

617-643-9101 (telephone)

617-724-7426 (fax)

Neurology Associates

15 Parkman Street

Boston, MA 02114-3117

617-724-7426 (telephone)

Fax: 617-724-6513

The email I actually reached him at probably wasn’t the best way to email him in person was for the National RLS Opioid Registry and it is RLSregistry@partners.org and as the Principal Investigator of the study he did get the email I sent in complete desperation. I think you’d be best off calling the Neurology Associates, though his contact information does list both locations and that he is accepting new patients. The telephone number he left on my voicemail was, I believe, his personal cellphone number that I could give my physician and he’d talk with her for me so I don’t, without his blessing, feel comfortable giving out because it wasn’t shared with me in that manner. I hope that makes sense and doesn’t seem unreasonable but if it is his personal number it’s not mine to be giving out.

Please do let us all know how things work out. These are incredibly kind and special physicians. Again, if you’re not limited to California or Massachusetts there is University of Michigan in Ann Arbor, Michigan and the awesome doctor I see there is Dr. Andy Berkowski (he received his Fellow under Dr. Buchfuhrer who endorsed him to me) who specializes in severe RLS with offices at Michigan Medicine Sleep Clinic, Med Inn Building, Floor 7, 1500 E Medical Center Drive, SPC 5845, Ann Arbor, MI 48109-5845 and Michigan Medicine Sleep Disorders Center, Domino’s Farms, Lobby L, 24 Frank Lloyd Wright Drive, Ste 1400, Ann Arbor, MI 48105-9484. The phone number is actually the same for both and is 734-936-9068. I’m very thankful to Dr. Berkowski as well because without him I’d be traveling around across the country and he is very knowledgeable and caring. He’s pretty scathing of doctors who refuse to prescribe opioids to help their patients. He also does virtual visits as well so it’s not necessary to travel. Just a thought. I’m not sure if your initial consultation would have to be in person but I suspect it would as I has to sign a narcotics contract and do a urine drug screen that our stupid insurance will not cover despite the fact Michigan law requires it be done. Hope I helped you and hopefully someone else.

Much love and big hug again 🙂,

Sus

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By the way in response to your being treated like a junky. Been through that and like I was and am a mental mess. Mostly because one doctor at the sleep clinic I used to go to lied to my primary doctor saying my RLS was psychosomatic and it was all over discussed in my chart, which is an out and out lie because I have all my records and nothing even close to that is true and I’ve never been treated by this doctor who said that. But despite that my primary doctor, even after I told her it wasn’t true and I could prove it, went on to share the information with my at the time new neurologist and they both then decided I didn’t really have RLS and was too focused on methadone when it had been the only medication, after seriously trying everything used at the time to treat RLS, to help severe refractory RLS and did so for 13 years before the opioid crisis in this country. After a full year of hell and being treated like a junky and just overall poorly, I’m FINALLY back to where I was with my RLS under good control.

Sus

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Elisse2

You will be in good hands with either of those two doctors. Both have done research on RLS and have their names on papers about RLS. They both ""get it" Dr B has books published on RLS. I think we have one or two members on here who have seen Dr. B i know other RLS groups i belong to there have been several people who see Dr B. Lets us know who you get to see .

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Elisse2

In response to you all having such a hard time or have had a hard time from so called doctors who are supposed to treat their patients with respect and "do no harm" i feel for you all. Thankfully the opiate so called crisis hasnt reached the UK, altho i think we do have doctors who are reluctant to prescribe opiates. More so, because they think we will all be addicted and dont understand how pain meds can work for RLS. and yes we get dependent on them just as any one who has to take meds for any chronic illness will be dependent on what they take to keep their condition under control. Big difference to addiction and dependency.

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Mona7

I see Dr B. He is the most kind, soft spoken gentle doctor I've come in contact with. I told him how a doc got his ego hurt because I wouldn't take the drug he prescribed. Dr B leaned over grabbed my hand and said Lisa I would not be offended if you did not want to take a drug that I prescribed. We will work out your plan together. He put me on low dose of methadone. His research shows opiates are the better choice for extreme RLS. Go to his website there you'll find a wealth of information for you and your doctor. Rlshelp.org. Dr B. Sees patients in Downey California where his practice is. One day a month he is at Stanford Sleep clinic in Palo Alto California. I hope this helps you . FYI scheduling for Dr. B at the Stanford clinic is six months out.

Your telephone number was removed for your own security. (Kaarina)

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Shumbah
Shumbah
in reply to Mona7

Hi Mona

It certainly does help , the kind touch of a doctor , and to know someone has your back and best interests at heart .

I would never be able to get Methadone in Australia, or travel with it internationally at this stage

I am really happy for you 😊

I

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Mona7
Mona7
in reply to Shumbah

There are other opiates that he can prescribe. And don't forget to look up his website rlshelp.org there is a list of all the drugs used for RLS the pros and cons of each. The site is for you the patient and your doctor. Best of luck!

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Elisse2
Elisse2
in reply to Mona7

Hi Mona, love your comment on Dr B. glad he has helped you, he is the best.

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Kaarina
KaarinaAdministrator
in reply to Elisse2

I have removed Mona7's telephone number from her posting. Thank you for pointing this out, Elisse.

1 like
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Elisse2
Elisse2
in reply to Kaarina

Ok thank you Kaarina, i will delete that part of my comment now.

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Mona7
Mona7
in reply to Elisse2

I'm a real estate agent and this number is public

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Elisse2
Elisse2
in reply to Mona7

Oh ok, i think you need to ask Kaarina if you can repost it.

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Shumbah
Shumbah
in reply to Mona7

I was obviously to slow to get your number 🙂

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Kaarina
KaarinaAdministrator
in reply to Shumbah

Hi Shumbah,

You can PM (private message) Mona7 on the forum using the Chat icon and obtain her telephone number that way.

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Shumbah

I Owned my own realestate agency for 15 years in North Queensland Australia I loved it 🙂

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Shumbah

Hi Kaarina ,

I am struggling to see the chat button

Heading back to bed will try and find it again tomorrow

Technology not my best subject

Lucky I had used to have staff for that

🙂

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Elisse2
Elisse2
in reply to Shumbah

Hi Shumbah at the top of the page there is what looks like two circles and says Chat beside it . Hope when you wake up that helps you find it.

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