Neurologist Has No Clue

[EdSoFlo]

Hi all -

I'll try to be as brief as possible and give the Readers Digest version of my situation. Officially diagnosed pretty severe RLS a bit over 8 years ago, by excellent sleep doc in Los Angeles. Tried all 1st and 2nd line medications, to no avail, arrived at wonderful solution with 5mg Oxycodone nightly. Worked great and reliably for 5 1/2 years. I then moved to South Florida in summer '13, and discovered there is a massive fear of prescribing opioids. It seems they had a terrible pill mill problem here and in reaction swung so far the other direction that doctors have a real reluctance to prescribe it - even when 100% appropriate, at a very low dose, and with years of safe effective use (me.) I found a neurologist to treat me, and he would not prescribe it. So we tried the few things I hadn't, Lyrica (horrible), the Neupro Patch (not effective), a muscle relaxant called Baclofen. In a last ditch attempt we tried Sinemet 25/100, and lo and behold, it worked fairly well, I'd say about 65-70% as well as the Oxycodone, which was better than nothing.

After about 3 months it was wearing off in the middle of the night, so I started taking another pill then. Soon after, that would only get me through another 2-3 hours. So my Dr. put me on the Sinemet 50/200 long release, and that helped, though it took a long time to kick in. Well at this point I'm sure you've guessed the rest. Augmentation with a capital A, symptoms kicking in about 5 pm, moving to arms, waking me up raging, present first thing in morning, terribly severe in the evening. Doubled the dosage which helped for a bit, then didn't and everything just getting worse and worse. I saw a pain specialist for a month in the middle of all this (referred to by my Dr.) and he did put me on Percocet 5mg which was almost instant relief (tho to combat the augmentation 10mg was needed) and I thought my problem was solved except 1) they needed to see me monthly at a fairly high cost and 2) I got the bill for their mandatory urine screen, required every other month, for $1200. Yes that's right, $1200. That was a no go so back to Sinemet I went.

It's all just gone downhill from there and I saw my Neuro yesterday and explained my plight and requested even just a month's prescription of an opioid to wean off this wretched drug, and get some relief. No go. He called Sinemet a 'very safe drug' and I really don't think he has even a vague understanding of what augmentation is, or that Sinemet has a terrible track record of causing it. I even brought printouts of both Dr. Buchfurher's interview about it, and the Mayo Clinic's protocols, and he had zero interest in them and in fact it was obvious he was offended that I even brought them in. I'm at wits end here, and it's clear I need a new Dr. I'm incredibly busy and don't have the time to run around trying one here, one there, to no avail. If anyone knows of a decent RLS Dr. anywhere in S Fla I'd be grateful. There are some on the recommended list here but honestly it feels like a grab bag, I'd love to know what the criteria/process is to get on that list (for example one on the list in my area is a psychologist who can't prescribe medication, one is a Gericatic Medicine Dr. etc.) And any advice in general would be amazing. All I know is that I have to get off of this medication or this will just get worse and worse. Thank you all.

[JimmyLegs44]

I agree that you need to find a new healthcare provider. That's scary that he doesn't understand the risks associated with dopamine drugs on RLS patients.

I'm a member of a service club in Minnesota. Just yesterday a representative from our local health system gave a presentation, and spoke at length about how they are "educating" their doctors about prescribing opioids for chronic pain. Reading between the lines, it certainly appears they are making it more difficult for their doctors to prescribe opioids (patients would have to undergo regular urine tests, pill counts, etc.). As an RLS patient, I'm thinking to myself "Well, there goes that option". I wanted to ask her if they could also educate their doctors about the risks associated with prescribing dopamine drugs to RLS patients. Their doctors are clueless about RLS. I've given up working with mine, and will be going to Mayo Clinic in November.

I know it's not So. Florida, but there is a Mayo Clinic Sleep Disorder Center in Jacksonville, although I know absolutely nothing about the doctors there. Might be worth looking into. Good luck!

[Rustsmith]

It really upsets me when I hear stories like this where the "care" we are receiving from supposed specialists borders on malpractice. My history includes one doctor whose ignorance was just about as bad.

Another option that you might consider, but that requires some travel, is the RLS Foundation's newest Quality Center at Emory Sleep Center in Atlanta. Yes, it is not S. Fla, but when we have severe or complex issues, sometimes it is worth it to bite the bullet and go somewhere that you know that you will be treated correctly.

[EdSoFlo]

Thank you both for your replies, and for your support/understanding and ideas. Sorry for delay have been busy (and groggy!) I would happily travel to Jacksonville for proper care and will look into that ASAP. Yes it really is unfortunate that this class of medication of which there is no substitute really for many, and the vast majority of legitimate users do NOT abuse or have addiction issues with whatsoever, have become a tool for politicians to use to show they are 'tough' on drugs (pressuring doctors etc.) But if we all stay determined hopefully we can find specialists that truly get it, and who will provide proper care regardless (without ripping us off blind that the pain place I was referred you!) I'm considering twice yearly visits back to LA either to see my old sleep Dr, or Dr. Buchfuhrer, but hopefully I can still find a solution here.

Thanks again, all best and will let you know what I find.

[debbluebird]

Here are names from our list. See them under General topics.
Robert Hauser, MD Tampa, Fla
Stuart Isaacson, MD Boca Raton, Fla
Benard Macik, MD Largo, Fla
David Seiden, MD Pembroke Pines,Fla
Stephen Sergay, MD Tampa, Fla
Alberto B Vasquez St Petersburg, Fla

[ViewsAskew]

Sigh. I keep thinking that as some point people will stop having these experiences. Apparently not yet.

I do hope you find someone better.

[crazylegs0004]

Hi all -

I'll try to be as brief as possible and give the Readers Digest version of my situation. Officially diagnosed pretty severe RLS a bit over 8 years ago, by excellent sleep doc in Los Angeles. Tried all 1st and 2nd line medications, to no avail, arrived at wonderful solution with 5mg Oxycodone nightly. Worked great and reliably for 5 1/2 years. I then moved to South Florida in summer '13, and discovered there is a massive fear of prescribing opioids. It seems they had a terrible pill mill problem here and in reaction swung so far the other direction that doctors have a real reluctance to prescribe it - even when 100% appropriate, at a very low dose, and with years of safe effective use (me.) I found a neurologist to treat me, and he would not prescribe it. So we tried the few things I hadn't, Lyrica (horrible), the Neupro Patch (not effective), a muscle relaxant called Baclofen. In a last ditch attempt we tried Sinemet 25/100, and lo and behold, it worked fairly well, I'd say about 65-70% as well as the Oxycodone, which was better than nothing.

After about 3 months it was wearing off in the middle of the night, so I started taking another pill then. Soon after, that would only get me through another 2-3 hours. So my Dr. put me on the Sinemet 50/200 long release, and that helped, though it took a long time to kick in. Well at this point I'm sure you've guessed the rest. Augmentation with a capital A, symptoms kicking in about 5 pm, moving to arms, waking me up raging, present first thing in morning, terribly severe in the evening. Doubled the dosage which helped for a bit, then didn't and everything just getting worse and worse. I saw a pain specialist for a month in the middle of all this (referred to by my Dr.) and he did put me on Percocet 5mg which was almost instant relief (tho to combat the augmentation 10mg was needed) and I thought my problem was solved except 1) they needed to see me monthly at a fairly high cost and 2) I got the bill for their mandatory urine screen, required every other month, for $1200. Yes that's right, $1200. That was a no go so back to Sinemet I went.

It's all just gone downhill from there and I saw my Neuro yesterday and explained my plight and requested even just a month's prescription of an opioid to wean off this wretched drug, and get some relief. No go. He called Sinemet a 'very safe drug' and I really don't think he has even a vague understanding of what augmentation is, or that Sinemet has a terrible track record of causing it. I even brought printouts of both Dr. Buchfurher's interview about it, and the Mayo Clinic's protocols, and he had zero interest in them and in fact it was obvious he was offended that I even brought them in. I'm at wits end here, and it's clear I need a new Dr. I'm incredibly busy and don't have the time to run around trying one here, one there, to no avail. If anyone knows of a decent RLS Dr. anywhere in S Fla I'd be grateful. There are some on the recommended list here but honestly it feels like a grab bag, I'd love to know what the criteria/process is to get on that list (for example one on the list in my area is a psychologist who can't prescribe medication, one is a Gericatic Medicine Dr. etc.) And any advice in general would be amazing. All I know is that I have to get off of this medication or this will just get worse and worse. Thank you all.

I am so glad i ran across this. I recently moved from valrico Fl. However 1 year ago when i first moved there i struggled as well to find someone who would write me pain meds for my rls. I have it so severe it happens all day and night and affects my arms and legs. My whole life is effected by this. However in plant city fl there is a neurologist named Dr. Digeronomo. He was my life saver. He prescribed me 120 hydrocodone 10/325 and 60 extended release morphine 15mg. I was finally able to live. I hope this message finds you. He will help you. Good luck.

[badnights]

However in plant city fl there is a neurologist named Dr. Digeronomo. He was my life saver. He prescribed me 120 hydrocodone 10/325 and 60 extended release morphine 15mg. I was finally able to live. I hope this message finds you. He will help you. Good luck.

Huge thank you for posting this.

[Hannah]

Hello everyone: I live in NYC and went to see a Neurologist with the best diplomas from the best schools hang in her office. I do believe that she is probably good at treating serious neurologist disorders but she had elementary knowledge about RLS and certainly no knowledge about medications or augmentation. She charged my insurance $350 for nothing. Before I went to see her, I asked if she treats RLS and they assure me that she does. NOT !! She needs to go back to school for a real diploma about RLS she does not know anything about. What I am trying to say is beware of what a secretary tells you, they are as ignorant as the doctor. I suggest that the RLS foundation, before putting the name of a doctor who treats RLS on the list, they should do the job of investigating that the doctor is knowledgeable about RLS and RLS medications, they are the RLS Foundation who are supposed to help members and it will be really nice if they put on their list the knowledgeable RLS doctors, not just the one who claim they know about RLS. In fact, I would like to know how they decide to put an RLS doctor of their list. Is it too much to ask? I would like members comments and the Board comment, please. Thanks a lot !!
Hannah (my first post today!!)

[ViewsAskew]

Hello everyone: I live in NYC and went to see a Neurologist with the best diplomas from the best schools hang in her office. I do believe that she is probably good at treating serious neurologist disorders but she had elementary knowledge about RLS and certainly no knowledge about medications or augmentation. She charged my insurance $350 for nothing. Before I went to see her, I asked if she treats RLS and they assure me that she does. NOT !! She needs to go back to school for a real diploma about RLS she does not know anything about. What I am trying to say is beware of what a secretary tells you, they are as ignorant as the doctor. I suggest that the RLS foundation, before putting the name of a doctor who treats RLS on the list, they should do the job of investigating that the doctor is knowledgeable about RLS and RLS medications, they are the RLS Foundation who are supposed to help members and it will be really nice if they put on their list the knowledgeable RLS doctors, not just the one who claim they know about RLS. In fact, I would like to know how they decide to put an RLS doctor of their list. Is it too much to ask? I would like members comments and the Board comment, please. Thanks a lot !!
Hannah (my first post today!!)

Hurrah for the first post, Hannah!

I have been in your shoes several times. A few times the insurance paid for it; several times I did. Either way, what a waste.

I think this is why the Foundation created the Quality Care Center designation. The list is just doctors who SAY they can do it. To check the qualifications takes a LOT of effort, time, and money. The QCC designation allows them to be very thorough and make sure the docs meet the requirements. The only drawback of this rigorous system is that we only have 11 or 12 of them throughout the world, so far! None in Chicago, yet, either, and none anywhere in the west after Minnesota until you hit the coast. Hopefully Colorado soon...and maybe NY one day. At least there is one in Maryland, one in Maryland and one in Connecticut.

https://www.rls.org/treatment/quality-care-centers

[Rustsmith]

Hannah, sorry you had to go through with that. Unfortunately, it is a story that many of us can relate to.

I found that rather than asking the doctor's receptionist, I asked to speak with the lead nurse. On several occasions the receptionist reported that the doctor treated RLS patients. But I got a very different story when I spoke with the nurse. Usually the doctor had a few patients with mild RLS, which is probably what the receptionist was thinking about. I got a different story from the nurse, some of whom were quite candid about the doctor's lack of experience in this area. I found that there were three questions that were telling. 1) Does your doctor have experience treating patients with severe RLS? 2) Does the doctor have experience treating RLS patients who are experiencing augmentation? and 3) Is your doctor willing to prescribe opioids for patients with severe RLS who have undergone augmentation on dopamine agonists. If the nurse's answer is not a resounding Yes to all 3 questions, keep looking.

[ViewsAskew]

Hannah, sorry you had to go through with that. Unfortunately, it is a story that many of us can relate to.

I found that rather than asking the doctor's receptionist, I asked to speak with the lead nurse. On several occasions the receptionist reported that the doctor treated RLS patients. But I got a very different story when I spoke with the nurse. Usually the doctor had a few patients with mild RLS, which is probably what the receptionist was thinking about. I got a different story from the nurse, some of whom were quite candid about the doctor's lack of experience in this area. I found that there were three questions that were telling. 1) Does your doctor have experience treating patients with severe RLS? 2) Does the doctor have experience treating RLS patients who are experiencing augmentation? and 3) Is your doctor willing to prescribe opioids for patients with severe RLS who have undergone augmentation on dopamine agonists. If the nurse's answer is not a resounding Yes to all 3 questions, keep looking.

Most nurses I spoke to were as forthcoming, also. I had one who went out of the way to tell me the name of a different doctor to see. I used this approach when I had knee surgery - and was sent to a different doc, too.

[Hannah]

Rustsmith, thanks a lot for the suggestion. After I read what you wrote, I called today and asked to speak directly to the doctor before my appointment to ask him "if he has experience treating patients who are experiencing augmentation". The assistant took note and told me she is going to ask him and I can call tomorrow to speak directly to him because today he is not there. Great!!
Talk to you soon. Hope you are having a good day!! Hannah

[Hannah]

Hello members !!
I need your help in the following. I have an appointment with a Neurologist and I called him to ask him - as it was suggested in this forum - if he has experience treating patients who are experiencing augmentation, that's what I need from him, to discuss my medicines. So he asked me what do I take and I told him Lyrica 175mg and pramipexole 0.75 mg. So he told me I have to increase pramipexole. I told him I don't want to increase pramipexole because it's addictive, I rather increase Lyrica. So he told me it's Lyrica that is addictive, not pramipexole. So I told him we will discuss this when I see him.
So my question now to you dear members, since I am a lot ignorant when it comes to augmentation, which medicine I should increase, Lyrica (as I think) or pramipexole (as he told me). I want to be informed before my appointment, so I will know what I am talking about. Anyone with the same experience or knowledge who can help, I will really appreciate. Also if you think that my writing is not good English writing, I will agree since English is not my primary language. Hannah

[Rustsmith]

Technically he is correct that pramipexole is not addictive. However, getting off of it can be extremely difficult. Also, a dose of 0.75mg of pramipexole is more than is normally recommended for the treatment of RLS (I took that much at one time myself). Most doctors have a maximum dose of 0.5mg and some experts are now saying that the limit should be 0.25mg. So, suggesting that you should increase the dose from 0.75mg is an indication that he does not understand the issues associated with augmentation. For reference, higher doses of pramipexole are approved for the treatment of Parkinson's Disease, which is probably what he is basing his comment on. A higher dose will help with your symptoms for a short time, but your symptoms will return rather quickly and the higher dose will make it that much more difficult for you when you do have to stop taking it.

As for Lyrica, it is also a medication that requires care to stop. Getting of of Lyrica requires care because there can be problems if you stop it too quickly. However, you will not experience the severe loss of sleep when you stop Lyrica like you will if you stop taking pramipexole without being able to use an opioid medication to cover the withdrawal symptoms.

Now for my personal opinion - I do not think that this doctor is very familiar with the treatment of RLS patients and I am confident that if he would not have said this if he were familiar with the treatment of RLS patients who are experiencing augmentation. Therefore, unless he changes his recommendations when you see him, I would be very careful with your decision about whether to follow his advice rather than finding a different doctor who is more knowledgeable with the treatment of RLS.