Neurologist Has No Clue

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EdSoFlo
Posts: 8
Joined: Tue Jan 06, 2015 4:44 am

Neurologist Has No Clue

Postby EdSoFlo » Tue Sep 15, 2015 12:13 pm

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
Posts: 82
Joined: Thu Oct 01, 2009 5:24 am

Re: Neurologist Has No Clue

Postby JimmyLegs44 » Tue Sep 15, 2015 1:00 pm

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!
The best way out is always through. - Robert Frost

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Neurologist Has No Clue

Postby Rustsmith » Tue Sep 15, 2015 1:15 pm

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

EdSoFlo
Posts: 8
Joined: Tue Jan 06, 2015 4:44 am

Re: Neurologist Has No Clue

Postby EdSoFlo » Tue Sep 29, 2015 12:17 pm

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
Posts: 1545
Joined: Mon May 21, 2012 3:27 pm

Re: Neurologist Has No Clue

Postby debbluebird » Tue Sep 29, 2015 2:53 pm

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
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Neurologist Has No Clue

Postby ViewsAskew » Wed Sep 30, 2015 6:44 am

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

I do hope you find someone better.
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.

crazylegs0004
Posts: 1
Joined: Sat Dec 05, 2015 7:58 pm

Re: Neurologist Has No Clue

Postby crazylegs0004 » Sat Dec 05, 2015 10:13 pm

EdSoFlo wrote: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
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Neurologist Has No Clue

Postby badnights » Sun Dec 06, 2015 7:47 am

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.
:thumbup: Huge thank you for posting this.
Beth - Wishing you all restful sleep tonight
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