New to forum, 35 yrs RLS

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stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

New to forum, 35 yrs RLS

Post by stjohnh »

Hi my name is Holland. I'm a 68 year old retired MD, internal medicine. I've been lurking here a few weeks now. I have had RLS since about age 35, my mother had it as well. I've been on medication a little less than two years, requip, then mirapex, then neupro. Had rash with neupro so went back to mirapex and had been on mirapex about a year when I started augmenting. Happily I realized it before my dose of mirapex got very high and was able to transition back to 1 milligram neupro patches. I recently added Gabapentin in hopes of keeping the dose of neupro low and of improving my sleep, I was waking up at 1 a.m. pretty much every morning and not being able to go back to sleep. Gabapentin helps, however I still felt tired and run-down in the morning.
Thinking that it may help for me to get off the dopamine agonist for a while, I abruptly stopped the neupro and gabapentin and have been using Kratom alone for 5 days. As expected, it has been quite difficult, kratom helps but certainly doesn't control the symptoms anywhere near as well as the neupro.
My thinking is to see if I can use neupro with Gabapentin for 3 weeks out of the month and for one week out of the month use kratom. An alternate plan I am considering is to try low dose neupro with low dose kratom daily.
With Kratom alone I have symptoms pretty much 18 hours a day everyday. I know that I am likely to end up on methadone sometime between the next few months and the next few years.
Anyway I have gathered a great deal of information from reading these boards and the literature from the RLS Foundation. My primary care doc knows a little bit about RLS but only the very basics and has not had patients with my severity.

Thanks to all involved, my experince is that people wo RLS just can't understand how miserable this disease is.
Blessings,
Holland

Rustsmith
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Re: New to forum, 35 yrs RLS

Post by Rustsmith »

Holland, welcome to the discussion board. I am pleased that you have found the information here beneficial. Yours is the type of feedback that helps keep us (the moderators) going.

Have you seem reference to the book Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening, Second Edition? It can be found on Amazon is provides the latest info on the treatment of RLS as well as what not to do.

Since you mentioned methadone, I would be interested to hear your take as a physician (retired) on the pressure being placed on doctors to severely limit (or completely stop) writing prescriptions for opiates. I understand the issue of limiting access to addicts, but the pendulum seems to have swung to the point where patients who [url]really[/url] need them either cannot get them or are being forced into pain clinics where they are treated like they are addicts. Do you see this getting worse or are we near the point where the pendulum will start swinging back toward a more realistic environment?
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.

Polar Bear
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Re: New to forum, 35 yrs RLS

Post by Polar Bear »

Holland, have you had your ferritin serum level checked.
This is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Steve,
The pressure on doctors not to prescribe opiates is somewhat overblown. Just a few years ago California passed some regulations requiring doctors to be open to prescribing opiates for chronic pain as many chronic pain patients were not getting enough pain relief. Since then the more open prescribing rules have resulted in an increase in abuse problems. The rules vary from state to state, however for the most part if a doctor adequately documents the reason for prescribing, opiates can be prescribed without undue hardship on the doctor.
Blessings,
Holland

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Polar bear,

I had my ferritin checked a couple of years ago, it was "normal" at 28. Since then I now realize that a normal blood ferritin doesn't correspond to a normal brain iron and have since been trying to get my brain iron up by taking three times daily ferrous sulfate.
Blessings,
Holland

ViewsAskew
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Re: New to forum, 35 yrs RLS

Post by ViewsAskew »

Good luck with the oral iron, Holland. It does indeed work for some - hope you are one. I went the infusion route (my first two ferritin results were 16 and 8). After my first infusion, I was already down to 75 in just 3 months. Our bodies just dump it, oddly enough.

I am one who alternates - and have managed to use a DA for about 6 years now, this way, along with only raising my opioid dose once in that time. It's not optimal - the side effects aren't what I'd prefer by any means - but I can actually work again! And, after losing too many clients to keep my small consulting firm going, that has been pretty awesome. It's not a 9-5 gig, but I couldn't have even done this a few years ago.

Whether doctors are truly pressured or not, many seem to be terrified. I've actually had three different doctors "fire" me because of their fear and another 10-15 refuse to treat me. I now just fly to CA to see Dr. Buchfuhrer every year rather than try to work with yet another doctor who doesn't "get" RLS and why opioids are helpful.

Glad to have you here - welcome. Of course, never happy or glad that someone else needs to be here!
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.

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Ann,

I live in California, have been retired for 6 years, however at the time I retired there was more pressure to prescribe opiates for chronic pain patients than there was to avoid prescription. Prescribing rules are determined on a state-by-state basis. If you had that many doctors avoid prescribing opiates, perhaps your state has been overly aggressive in trying to combat abuse.
Blessings,
Holland

Polar Bear
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Re: New to forum, 35 yrs RLS

Post by Polar Bear »

stjohnh - As you live in California you are in the position of being able to visit Dr B should the need arise.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: New to forum, 35 yrs RLS

Post by Rustsmith »

Holland, thanks for your comments. I have reviewed my state's current guidance documents to physicians and they do not seem to be too aggressive in limiting the use of opiates for chronic pain. However, as best I can tell, no doctor in my town is willing to prescribe them. I don't know if it is the increased paperwork that is involved or some sort of corporate policies that guide their practices. I just know that I was told that I had to go to the state medical school if I needed something other than a DA or an alpha-2-delta med. I don't yet know whether this is going to involve.
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.

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Rustsmith wrote:Holland, thanks for your comments. I have reviewed my state's current guidance documents to physicians and they do not seem to be too aggressive in limiting the use of opiates for chronic pain. However, as best I can tell, no doctor in my town is willing to prescribe them. I don't know if it is the increased paperwork that is involved or some sort of corporate policies that guide their practices. I just know that I was told that I had to go to the state medical school if I needed something other than a DA or an alpha-2-delta med. I don't yet know whether this is going to involvements.


Steve, you might get an answer to the question of why docs are hesitant to prescribe narcotics by asking a doc that is not commonly involved in narcotic prescribing (eye doc, dermatologist, etc) If the problem seems more serious in your state it may help (though not quickly) to write a letter to your state's medical licencing board, and get others to write letters.
Blessings,
Holland

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Rustsmith wrote:Holland, ... I just know that I was told that I had to go to the state medical school if I needed something other than a DA or an alpha-2-delta med. I don't yet know whether this is going to involve.

Steve, It seems extremely unlikely that no doctor in your state except for a medical school doctor would prescribe narcotics. I suspect that the local doctors that told you that just wanted to make sure that you didn't go to some doctor in a neighboring town, and in the process lose you as a patient.
Blessings,
Holland

Rustsmith
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Re: New to forum, 35 yrs RLS

Post by Rustsmith »

Anything is possible when it comes to the business side of the question. If there intention was not to lose me to a neighboring city, then they failed miserably because none of the neurologists in town will be getting any of my business.
I am not saying that no doctor in the state other than the med school is willing to write opiate scripts. I know of one who is also in the state capital who treats RLS and will write them. Unfortunately, she is just as far away so I will stick with the doctors that my GP has referred sent me to see.
Of course, all of this could blow up when I finally get to see the med school doctor next week. She could also refuse to treat me.
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.

ViewsAskew
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Re: New to forum, 35 yrs RLS

Post by ViewsAskew »

Steve - I know there must be doctors out there who are willing to help...but I know I've sure had a hard time finding them. I'm sure I could be accused of doctor shopping given that I've seen at least 15 to 20 local physicians.

When I had augmentation, the madness started. Since then I have seen:
-my PCP
-two of her partners, who prescribed benzos
-the original neuro who didn't know what augmentation was and gave me more DAs after horrible augmentation
-a sleep doc
-a neuro who said she could handle it and then referred me to her partner because she didn't have a clue
-that neuro's partner who knew what augmentation was but refused to provide opioids (she wanted me to wait 2-3 years for the patch to be approved because she thought that would solve it)
-a neuro who said he was the best RLS expert in the city...and said he'd never written for opioids and never would
-an PCP who did prescribe for two years and who worked with Dr B
-Dr. B, who I finally came to see trying to resolve tolerance
-another PCP who worked with Dr. B. for about 4-5 months before firing me as a patient (and without the next script so I had no meds on a weekend)
-another sleep doc who worked with Dr. B before transferring me to her partner
-the partner who worked with me for a few months and required monthly visits and wanted me to completely go through everything all over again to see if we really needed opioids, and who then refused to treat me when I said I would not

And, likely a doctor or two I am forgetting...

That doesn't count the many doctors I've emailed and called to see if they would work with me. To date, not one has. They've either said they refuse to deal with opioids or that my case is too complex for them.

So, in all of that, one doctor who actually tried to work with me. One. It truly is crazy at times, isn't it?

Wishing you a very different experience.
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.

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to forum, 35 yrs RLS

Post by stjohnh »

Ann,
That is a sad commentary on doctors in America.
Blessings,
Holland

ViewsAskew
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Re: New to forum, 35 yrs RLS

Post by ViewsAskew »

stjohnh wrote:Ann,
That is a sad commentary on doctors in America.


I honestly wish I could say my experience was an anomaly. The longer you stay here, Holland, the more of these stories you will read - and any of them are much worse than mine.

From people who can't afford to fly to another state, as I had to do, to those who live in rural areas and have no options, the stories are maddening.

One of our members was forced to deal with the death of his physician, whom he'd worked with for many years and which resulted in termination of services by the medical group. The doctor who took over refused to prescribe opioids, even though this person had NEVER had a dose increase in 4 or 5 years nor done anything that an addict or drug-seeking person does. What he went through after that was shameful.

Some of our members have been labeled as drug seeking just for seeing a new doctor when their current one wouldn't help them.

Some of our members have been denied care completely. In some parts of Canada, some of our members cannot get opioids at all, so when they have severe RLS, have had augmentation on multiple DAs, and the alpha 2 delta drugs do not work, they have NO options.

Some of our patients have been kept on DAs until they take 8-10 times the recommended dosage - and their doctors refuse to read about augmentation.

One person was restrained in the hospital after surgery - even after telling the staff about RLS - and actually broke bones from the thrashing around while restrained.

If I spent a couple hours looking through old posts, I'd find enough stories to write a book. And, maybe that is exactly what I should do.
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.

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