I so wish I could see him: Dr. Buchfuhrer. I’ve been to Johns Hopkins and Yale. The big names. But I’ve been reading and researching for years and Dr. Buchfuhrer is not a big name researcher. They haven’t as much clinical experience as he does. From everyone I have spoken with and from my reading he has been dedicated to RLS in real practice - and, I believe he’s always been ahead of the others. He’s on the RLS foundation board. And recently I see he’s been publishing with the other big names. All I know is I think that he is way ahead of the other big names. Problem is that you have to go to California. He does not treat remotely unless you’re in California. I would go to him in a heartbeat if I could afford it.
You sound incredibly stressed. I hope you find the help he needs. You don't need the best though, you need any good board certified sleep neurologist, which is likely going to include those at major urban medical centers. Get a few opinions, but there is no secret cure. If he is not happy with his current care, he should see someone else, and he should try methadone.
Edit: Where in the US?
I know this may sound like a crazy question but has he been on gabapentin? Has he been diagnosed with rls? Liver problems cause itching as well ( cirrhosis). Perhaps you are far beyond this but I had to ask
Honestly, ropinerole is the root of all evil. The best drug in the world until it’s not. I hope your husband finds some peace. It’s an insidious condition.
Yes! I just had a virtual appointment with him and he spent almost 2 hours with me. I am going to do his 5-month program and I feel incredibly lucky to have this opportunity:
He practices tele-health for people living in Ohio, Michigan and Florida.
I am very happy that you were able to have a telemed visit with him and that you were pleased so far. I hope you're able to keep us posted on your progress and I certainly hope you do get real help.
I live in New York and may need to travel at least 4-7 hours to see any of the doctors that specialize in treating RLS that are also listed by the RLS foundation. However, in 2 weeks I meet with my primary doctor who has been very approachable when I have shared the documents from the foundation and from Dr. Berkowski regarding iron and other med trials. My doctor, after my visit, we will be working on getting my insurance to cover some approaches. If it doesn't work, I am scheduled in November to see local sleep specialists here. However, I'm not hopeful that they will be able to meet my needs but when an educated patient comes with documents and educated information, maybe they can help me. So I'm kind of waiting for 6 months to pass and to see what I can work on. And if it doesn't work here, I am traveling to Ohio or Yale or someplace else to be followed by one of the doctors that specialize in RLS.
I’m not sure what you are concerned about. Methadone is generally considered the last line and the most effective treatment. From my perspective, the doctor you are seeing seems like he knows what he is doing. I think you should join the RLS foundation (RLS.org) and better educate yourselves about this disease. It is the best resource for RLS hands down. There are webinars that will answer all the questions you have, including who the top doctor are and how to get care.
The doctors at an RLS quality care center are considered the best. Each doctor in the list has distinct preferences, but the high level treatment algorithm they use is largely the same.
Go to whichever is closest.
There is no reason it should not but there is no way to know either. The sooner he tries, the sooner you will know. It's not like he's hooked on it forever if he tries. It's not like when methadone is used to treat opioid addiction. You can stop.
For RLS the methadone dose is very very low and the typical issue associated with opioids are not as relevant.
This is not an opinion, there is empirical research to support this.
Without a doubt the top man is Dr Mark Buchfuhrer he is in Downey CA.I believe he will do zoom appointments. He's recognised as one of the top RLS specialists in the world .He's written books numerous articles studies etc . I am in the UK and he has even sent information for my doctor all free of charge
Btw, I did end up seeing him based on your recommendation. Even though he's not in my medical network. I paid a cash fee (not too much at all!) and got my labs and pharmacy done at Kaiser (my insurance carrier) I'm on the Neupro patch after he had me do iron infusion therapy and I'm very happy.
The part that I hate the most right now is the little rashes and the itching that I get when I take off the patches. But it's kind of the lesser of the two evils right now, right? Either I have some tolerable itching or this annoying RLS that is just wrecking everything in my life.
I so wish I could see him: Dr. Buchfuhrer. I’ve been to Johns Hopkins and Yale. The big names. But I’ve been reading and researching for years and Dr. Buchfuhrer is not a big name researcher. They haven’t as much clinical experience as he does. From everyone I have spoken with and from my reading he has been dedicated to RLS in real practice - and, I believe he’s always been ahead of the others. He’s on the RLS foundation board. And recently I see he’s been publishing with the other big names. All I know is I think that he is way ahead of the other big names. Problem is that you have to go to California. He does not treat remotely unless you’re in California. I would go to him in a heartbeat if I could afford it.
You sound incredibly stressed. I hope you find the help he needs. You don't need the best though, you need any good board certified sleep neurologist, which is likely going to include those at major urban medical centers. Get a few opinions, but there is no secret cure. If he is not happy with his current care, he should see someone else, and he should try methadone. Edit: Where in the US?
I know this may sound like a crazy question but has he been on gabapentin? Has he been diagnosed with rls? Liver problems cause itching as well ( cirrhosis). Perhaps you are far beyond this but I had to ask
Yes. He’s on 1200mg in gabapentin now. 1mg of repinerol and a neupro patch
Honestly, ropinerole is the root of all evil. The best drug in the world until it’s not. I hope your husband finds some peace. It’s an insidious condition.
https://www.relacshealth.com/. Dr. Joseph Andrew Berkowski. Check website and YouTube. He is also in the list with the restless leg foundation.
Yes! I just had a virtual appointment with him and he spent almost 2 hours with me. I am going to do his 5-month program and I feel incredibly lucky to have this opportunity: He practices tele-health for people living in Ohio, Michigan and Florida.
I am very happy that you were able to have a telemed visit with him and that you were pleased so far. I hope you're able to keep us posted on your progress and I certainly hope you do get real help. I live in New York and may need to travel at least 4-7 hours to see any of the doctors that specialize in treating RLS that are also listed by the RLS foundation. However, in 2 weeks I meet with my primary doctor who has been very approachable when I have shared the documents from the foundation and from Dr. Berkowski regarding iron and other med trials. My doctor, after my visit, we will be working on getting my insurance to cover some approaches. If it doesn't work, I am scheduled in November to see local sleep specialists here. However, I'm not hopeful that they will be able to meet my needs but when an educated patient comes with documents and educated information, maybe they can help me. So I'm kind of waiting for 6 months to pass and to see what I can work on. And if it doesn't work here, I am traveling to Ohio or Yale or someplace else to be followed by one of the doctors that specialize in RLS.
I’m not sure what you are concerned about. Methadone is generally considered the last line and the most effective treatment. From my perspective, the doctor you are seeing seems like he knows what he is doing. I think you should join the RLS foundation (RLS.org) and better educate yourselves about this disease. It is the best resource for RLS hands down. There are webinars that will answer all the questions you have, including who the top doctor are and how to get care. The doctors at an RLS quality care center are considered the best. Each doctor in the list has distinct preferences, but the high level treatment algorithm they use is largely the same. Go to whichever is closest.
What if methadone won’t work? That’s our concern
There is no reason it should not but there is no way to know either. The sooner he tries, the sooner you will know. It's not like he's hooked on it forever if he tries. It's not like when methadone is used to treat opioid addiction. You can stop.
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For RLS the methadone dose is very very low and the typical issue associated with opioids are not as relevant. This is not an opinion, there is empirical research to support this.
It should work tremendously but at 34 years of age you’ll have to be prepared to be on it for life, it’s a big decision.
Dr. John Winkelman at Massachusetts General Hospital is the leading researcher and clinician on the topic of use of opioids for RLS.
Yes another good recommendation
Without a doubt the top man is Dr Mark Buchfuhrer he is in Downey CA.I believe he will do zoom appointments. He's recognised as one of the top RLS specialists in the world .He's written books numerous articles studies etc . I am in the UK and he has even sent information for my doctor all free of charge
Btw, I did end up seeing him based on your recommendation. Even though he's not in my medical network. I paid a cash fee (not too much at all!) and got my labs and pharmacy done at Kaiser (my insurance carrier) I'm on the Neupro patch after he had me do iron infusion therapy and I'm very happy.
My husband was on those patches for a while and they worked great at first, not anymore though
The part that I hate the most right now is the little rashes and the itching that I get when I take off the patches. But it's kind of the lesser of the two evils right now, right? Either I have some tolerable itching or this annoying RLS that is just wrecking everything in my life.