I feel like a new woman since visitin... - Restless Legs Syn...

Restless Legs Syndrome

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I feel like a new woman since visiting this Doctor

Marvene1942 profile image
53 Replies

I had an appointment with Dr. Buchfuher May 23 of this year. He stopped my Primpexel and put me on Methadone. Today is July 4th and I feel like a new person. No more RSL and I sleep thru the night. So far I have lost 13 pounds. This Dr. is the greatest. He always answers my messages. I can send him a message and he answers me within the day.

On my first appointment he took almost 2 hours with me explaining everything to me. He is the best Dr. in the US,

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Marvene1942 profile image
Marvene1942
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53 Replies
Lapsedrunner profile image
Lapsedrunner

Fabulous news!

Madlegs1 profile image
Madlegs1

That's what we've all been saying.

Just wish he had a clinic in Ireland, and that our medical authority had a better grasp of opiate prescribing.

in reply toMadlegs1

Wouldn't it be lovely to have some of that knowledge close at hand. Mind you - would it kill a Dr to read some f***ing research?

Delighted for you Marvene1942, long may it last.

Hoffie profile image
Hoffie

My neurologist just put me on methadone about a week ago and I am sleeping like a dream. I can even sit down in the afternoon without twitching around. A miracle drug!!!!

Jumpey profile image
Jumpey in reply toHoffie

Is this in the UK? So pleased for you.x

Hoffie profile image
Hoffie in reply toJumpey

I am in USA, New York State

Jumpey profile image
Jumpey in reply toHoffie

Ah. I thought so. It's not normally available in the Uk for RLS. Enjoy the respite from this challenging disease.x

LotteM profile image
LotteM

Wonderful news.

That's great news.

Joolsg profile image
Joolsg

How wonderful. I’m delighted for you. If only we could clone the best doctor in the world. The man is a diamond. He has answered all my emails within 5 hours, for free, and I’m not even his patient or in the USA.

Zbirth1 profile image
Zbirth1 in reply toJoolsg

I sent him a couple emails which he never answered and I called him when I was in a crisis situation. He was standing there listening while I begged the person who answered the phone to give him a message but I was told you had to be a patient of his. I’m so happy Minerva that you got such wonderful care and treatment. I wish I had.

Joolsg profile image
Joolsg in reply toZbirth1

I’m sorry to hear that. Perhaps he will only answer emails if you’re not his patient. I know he will not answer emails if they are not grammatically correct- it’s his one condition. I am not sure why he’s such a stickler for this but it’s set out in his website. I hope you managed to see another doctor to get help.

in reply toZbirth1

Hello! I am so sorry to hear that!! I don’t wish to offend here, but would you like any help with the grammar part (I’m assuming your grammar was as Joolsg said and wasn’t perfect — a bad thing to assume I know, so I apologize in advance)? I think it quite odd to have this requirement in general, especially for someone in a desperate situation. Is good grammar more important than life itself??? (Rhetorical question).

Let me know if I can help!🙂

rakeshlmotwani profile image
rakeshlmotwani in reply toJoolsg

Please share his email Id.

Joolsg profile image
Joolsg in reply torakeshlmotwani

If you visit his website

rlshelp.org/

You will find lots of useful info and pages of email questions and replies. Look at the most recent pages and you’ll see Dr Buchfuhrer sets out how to email him ( he likes Doctor, not Dr for example).

His email is

somno@verizon.net

It’s a very useful website and you may find someone else has already asked a similar question by looking through the questions and replies.

Snowdrop1947 profile image
Snowdrop1947 in reply toJoolsg

Are you saying that should I email him I should start the email with, Dear Doctor Buchfuhrer as opposed to Dear Dr Buchfuhrer? Perhaps he means that he doesn’t like the abbreviated form of doctor with in a sentence, which I would fully endorse.I can be a pedant but that does seem to be carrying it to extremes.

Does that mean I also have to spell colour, center etc the American way, and use the word practice as both a noun and a verb?

Pippins2 profile image
Pippins2 in reply toSnowdrop1947

I just put Dr B and he replies x

Snowdrop1947 profile image
Snowdrop1947 in reply toPippins2

Thank you.

Joolsg profile image
Joolsg in reply toSnowdrop1947

Excellent point.

I address him as Dr Buchfuhrer at the beginning of the email and I always use English spelling and grammar and he has always replied. However, his website does mention the following

‘Avoid use of Dr or doc instead of Doctor’

It does seem rather harsh and extreme.

Zbirth1 profile image
Zbirth1 in reply toSnowdrop1947

I’m pretty sure that I read somewhere that you have to spell every word out no abbreviations

Zbirth1 profile image
Zbirth1 in reply toSnowdrop1947

I am pretty confident that my grammar,punctuation & spelling fit his expectations. My RLS doc is also very anal 😐

Marvene1942 profile image
Marvene1942 in reply torakeshlmotwani

Here is his e-mail health.healow.com/MarkJBuch...

Lolly53 profile image
Lolly53

I’m so very happy for you!

Parminter profile image
Parminter

Lovely. Great news, and another high-five for low-dose opioids for those of us who need it.

Marvene1942 profile image
Marvene1942 in reply toParminter

I hate all the negative things we hear about Opioids . Some people like my husband takes one Morphine tablet a day. He is in severe pain from 4 back surgeries. He does not abuse it. What are people going to do when they are in severe pain.

Parminter profile image
Parminter in reply toMarvene1942

The great Doctor Willis, who first described this condition centuries ago, used opioids, as did other physicians up until Big Pharma got its hands on us. Ka-ching, ka-ching!

And methadone is so cheap - they cannot slap a patent on it. Yay.

I wish it were known just how dangerous the usual RLS meds are.

Marvene1942 profile image
Marvene1942 in reply toParminter

Yes Primaexole is a terrible drug. Dr. Buchfuher said he was going to do a seminar on not prescribing it to anybody. I was up all night couldn't sleep ate everything in sight. I usually weigh around 135 I was up to 177. It is the worst drug. Now that I am sleeping I have lost 13 pounds.

Parminter profile image
Parminter in reply toMarvene1942

I'm glad to hear you have overcome the compulsive thing - I spent a vast amount of money (and I have very little) in online shopping in the middle of the night - and I hate shopping!

I know how awful it feels to suffer a loss of control, and how one feels ashamed and guilty, even when you know it is not your fault.

And nobody bothers to tell you before they prescribe the stuff. I sometimes think that all doctors should be made to take the drugs they prescribe.

camperqueen profile image
camperqueen

That’s so wonderful - when can he visit UK! I wish.

Seeing GP today to ask for OxyContin - taking the NICE printout. I just pray I get somewhere. I need some sleep.

in reply tocamperqueen

What is the NICE printout?

camperqueen profile image
camperqueen in reply to

It’s a printout of UK guidelines for giving OxyContin for RLS. GPS are very reluctant to give out these tablets - they need to experience it just for a night !

Marvene1942 profile image
Marvene1942 in reply tocamperqueen

I wish I was rich I would buy round trip tickets do you could see my Doctor

Graham3196 profile image
Graham3196

Isn't that marvelous!!! I hope your relief continues.

Marvene1942 profile image
Marvene1942 in reply toGraham3196

Yes I hope it stays. Dr. B told me he has a 98 % sucess.

Jumpey profile image
Jumpey

Ab fab news. Hooray for you.x

RosieRow profile image
RosieRow

REALLY pleased for you. Dr B answered my email promptly and was very helpful - I'm in the UK!

Snowdrop1947 profile image
Snowdrop1947 in reply toRosieRow

How did he help you? I suffer from severe restless legs but the very well respected consultant in the RLS field has never recommended methadone. I live in the UK

RosieRow profile image
RosieRow in reply toSnowdrop1947

Hi Snowdrop

Dr B looked at my particular situation - taking Pregabalin and Oxycodone following withdrawal from Ropinirole - but I was getting extreme and intolerable tiredness and RLS in my arms in the afternoons and evenings, unable to drive because of fear of falling asleep!

He told me this was caused by Pregabalin. He recommended coming off it and simply taking Oxycodone. In the event, my GP (and I) felt we had nothing to lose by first switching (on advice of UK Neurologist) to Gabapentin. This seems to have worked.

This still leaves me the option of switching to just Oxycodone if/when necessary, but while it works I'm very happy to stick with it.

He would not recommend methadone for me because he knows we are not allowed to have it in the UK, more's the pity!

Palamino profile image
Palamino

You are very lucky to have such an understanding helpful doctor

Tennwalker1 profile image
Tennwalker1

Marvene,

Gosh, that sounds wonderful for you. I've only heard good things about Dr. Buchfuhrer. I was weaned off pramipexole several months ago. I'm on Horizant and Tramadol and they are working great now. I see a neurologist in St Louis on July 25th. He's the one that has prescribed what I'm on now. I'm a little too sleepy during the day for me, will see if he can tweak it for me when I see him. So happy for you though. Take care. A good night's sleep is so important.

Marvene1942 profile image
Marvene1942 in reply toTennwalker1

Thank you so happy you are off the terrible drug

Awesome news!

Lapsedrunner profile image
Lapsedrunner

There are others more knowledgeable than I on here re methadone but I believe that at low doses it is a safe, effective, long term treatment. It’s not taken for a high.

solticeart profile image
solticeart

no it isn't! who the hell told you that? actually, it's one of the safest pain meds you can take. As long as your not drinking alcohol with it. But then you should do that with any pain medication. thats, where you hear from a lot of the overdoses, are people who drank with it. you don't get the other side effects that you get from other pain killers. There's was a Doctor in Seattle who was an expert on using methadone and gives seminars about its use and he said its the most underutilized pain medication out there. I was on it for 18 years and never had one problem with it. the only reason I'm not taking it now is my doctor left the clinic and no one would write a script for it because of the opiate epidemic and the government scaring them about giving it out. Thats, when I got rls, is once it was all out of my system. I had 18 blissful no rls years.. I sure miss them!

Milefulano profile image
Milefulano

I've been on Methadone for my severe RLS for about a year and a half and it has 100% saved my life.

That's it.

Don't knock it 'till you try it if you need to.

Marvene1942 profile image
Marvene1942

I know I do not tell many people that I am on Methadone as they become shocked and tell me lots of things. But as you say sleeping is the best

Marvene1942 profile image
Marvene1942

Methadone in small quantities is safe. I take one half around three thirty and then two before bedtime.

byrnzy4 profile image
byrnzy4

If you live in New York, and Dr. B is in California, I wonder how he was able to prescribe Methadone for you? Does his office renew it each month and you pick it up locally? The reason I ask, is I spent a lot of money to go to Mayo Clinic in Minnesota, I live in Illinois, and they refused to prescribe any type of opiate because I was an "out of state patient" (because they have no way to prove I am not abusing opiates, I am not - only want RLS relief). It was a huge disappointment.

Marvene1942 profile image
Marvene1942 in reply tobyrnzy4

I live in Northern California

TheDoDahMan profile image
TheDoDahMan in reply tobyrnzy4

I'm a patient of Dr B. The way I understand it, your local State Pharmacy Board designates the rules for whether an out-of-state doctor's opioid perscription can be filled by a pharmacy in your state. I live in Nevada, whose rules state that I must visit Dr B in person once every 6 months, in order to maintain my status as "a bonafide patient" of his. Every month, I request his office to electronically send a refill request to my local pharmacy. Then they will fill it for me if it has been no longer than 6 months since I have seen him in person. However, every individual pharmacy and pharmacist is allowed to choose whether they, themselves, will actually fill that prescription for me. Depending on how worried they are regarding the current opioid panic, this can present problems, even for patients who have never abused a prescription in their lives. Good luck; you'll need it.

Its so lovely to hear of success stories, you saw the best doctor possible , we all wish we could have a Dr. B.

suzybe profile image
suzybe

OK if you're in US. I'm just plain jealous as my RLS can go on for more than 24 hours at a time and magnesium, gabapentin, ropinirole, tramadol and cbd oil have had no effect at all.

Ripl profile image
Ripl

Hi Marlene, so happy for you. In 2005 I woke with rls in middle of the night and it never stopped, 24 hours a day.

Saw 18 doctors in the next six months including psychiatrist. It ripped my world to shreds and I was barely capable of doing anything. The only time I slept was when I passed out.

I was prescribed all the rls meds listed here and not one worked.

I honestly did not.know how I was to live the rest of my life, I literally walked, iced, poured hot, hot water on legs 24 hours.

It was a fluke that I found a doctor at a sleep center, told her my story one more time not expecting help.....she told me, "you will sleep tonight."

Prescribed 20 mg methodone. I slept. My life began again.

I never had to go up, never asked to...it worked and I lived life again.

Sadly with the opioid epidemic doctors are pushed to get patients off of methodone. For three years I am again fighting this. I'm down to .5 mg and they are trying so hard to get me off.

.......I wake in middle of night with rls every night now. If I take 10 mg I'm fine.......I don't understand the severe stigma of methodone, it works. I'm 64 now and I'm tired of begging, pleading just let me take ten mg. But it's become a big issue getting me off completely. No prob getting MMC but it doesn't help with rls for me anyway. Tho I use for anxiety and Crohn's. Was just introduced to kratom.

A friend who has used it for years and works great, well not working for me. I have green maeng da capsules 00, white Malay capsules 00, and white Sumatra powder.

I have no idea how to take other than one a day. Reading info on here is what she told me, find lowest dose that works

I've felt nothing at all. No relief except belly pains which isn't great with Crohn's.

Can anyone give me suggestions with the kratom I have.

I'll be off the little methodone I take very soon and I'm scared to death of going back to being a walking zombie who can't deal with it anymore.

Sorry this was so long but I wanted to answer the post of methodone use and ask help with kratom. Thanks so much.

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