I'm back! ..... and scared

[Neco]

....and more pissed off than I've ever been


I haven't visited the forum in ages, but I guess its because my RLS was being treated and under control.. But now I fear that it is all in jeopardy.
Many of you may recall I was taking Methadone, and I'm still on it for sure, it works wonderful and I've been at a relatively stable dosage for months now. But ever since my original doctor died, I have been dealing with a string of doctors one after another; and I've just become the victim of the latest new face

I called up last Monday for my monthly refill and got a call back that evening stating I was "way overdue" for an appointment and needed to come in before I would be given anymore. I of course made a fuss about the fact I had no medication to last me until the next open appointment which was the following Monday and they thankfully gave me enough to last until then..

Then comes the appt today. Show up on time, get seen 35 minutes later and right from the bat she launches into some BS about "because we are a family practice" and "the legalities" and crap like that.. No real response to my point none of the other doctors brought this up! She made it abundantly clear she would not renew my medication again after pretty much forcing me to agree to a pain clinic referral or go back on to Requip or Mirapex after I had already made it clear those did not work for me; funny thing that she asked me if I'd tried them, when that information should be in my record and then she has the gall to use them as an alternative option she would prescribe?

Although I did make it clear my concerns about actually finding a doctor who would continue my treatment, she just restated the same old lines, that she would prescribe enough to make my appointment to this place but after that I would be cut off, if I reschedule I would be cut off, etc..

So now I have to wait for this place to call me to make an appointment... I hope to god I see somebody decent there.. Nevermind how I am going to afford routine 3 month appointments or urine tests or any other BS they'll probably make me go through if they even continue prescribing the stuff

I have enjoyed a stable life for the past few years, working sometimes 2 jobs, and just being a normal person who sleeps at night... I don't need this.

If anyone can help me find legit established research outlining Methadone for RLS treatment and guidelines I would appreciate it.. I hope to hell I don't end up backed into a corner and possibly sending myself into debt just to fly somewhere to see Buchfuhrer or another specialist who will actually listen...

[Polar Bear]

Hi Zack, good to hear from you, but not good to hear your news and that you are having diffs with your doctor. It is a fear that so many of us hold.
I moved house 10 years ago and it took me outside of the recognised geographical limit for my GP. GP agreed that I could remain on his 'books' but he wouldn't be doing house calls. At any time I could be told to register with a local doctor. Of course my reason for staying is that 'he knows me'.
The thought of starting to go over the whole story and try to convince a new doctor in a new practice of what works and does not work is all a bit scary.

Unfortunately, through no fault of your own this is the sort of position that you are in. A new doctor where no relationship has been built up, and one who appears to be none too familiar with WED and its treatment.

It sounds to me like she is looking for back up, looking for someone else to prescribe the necessary, and the make decisions.
I'm sorry that I am not familiar with the USA medical system. What I do understand is that it is the greatest thing ever when you have good medical insurance and a not very good situation if you don't have good medical insurance.

I'm delighted that you have been having a really good spell with your treatment and symptoms, Your records in the practice will be showing the reasons why your previous doctor prescribed the medications which have worked. It's a shame that your new doctor doesn't have the experience of WED that is required. Do you think she would be accepting of any of the Foundation publications? You have thought of this yourself, I'm sure.

Fingers crossed you have a good experience with the Sleep Clinic.

[Neco]

I doubt she would listen as far as my case goes.

She made it crystal clear that the real reason she does not want to deal with me is because I am on Methadone. Because I am the only person in the clinic who it is prescribed to, and even her non-answer about none of the other doctors bringing this up with me or having a problem with it was stupid as she basically tried to say "that was a different time under Dr. Ben" - my now dead original doctor who is certainly NOT every other doctor I've dealt with since he passed

[ViewsAskew]

I just posted a long post....and it's not here. Drat! Don't know what I did, but that sucks.

OK, so I went through my history and found some of the links.

First, though, a couple of ideas. I think you're still in Wisconsin. Do a search on RLS Wisconsin or Restless Legs Wisconsin. You'll come up with studies that were done by people who live in Wisconsin. They maybe good contacts to help you find someone.

Second, Dr Silber, who's been on the RLS board, is at Mayo in Minnesota. It's quite a drive, but you could do it and only have to pay for gas, the appointment, and maybe one night in a cheap hotel./

Third, going to CA to see Buchfuhrer is at least $600 to $1000 for the plane trip, rental car, appointment, and place to stay if you stay one night. You could fly in and fly out in the same day. And, he might take payments. But, you'd have to pay for the flight - it's cost me as little as $200 and as much as $450, depending on when I went.

For the studies about opioids - no one is studying methadone specifically (or opioids, really) because they are not new drugs and the drug companies don't make a lot from the patents anymore. Don't get me started on that - it's crazy that we don't study vitamins, minerals, and older drugs because they can't earn anyone enough money.

Dr Ondo, I think, did a couple studies, and there is a new study out of Germany. Try the paper in Beth's signature by Buchfurher. The book, Clinical Management of RLS, has info on opioids, including methadone. I take this with me to any new doctor I see.

http://brain.oxfordjournals.org/content/128/4/906.long

http://www.google.com/url?sa=t&rct=j&q= ... 5948,d.aWc

http://www.ncbi.nlm.nih.gov/pubmed/19167016

http://www.medscape.com/viewarticle/814058

See if those help.

I truly wish to never log on here again and have to see someone in your position, Zach. Too many of us have been - and continue to be - in that position and it's just not right.

[Neco]

Thanks for the links, Ann

[badnights]

That sucks to have to go to a pain clinic, but at least it's not a methadone clinic, where you might be regarded poorly by the staff. And I have heard some people have good experiences at a pain clinic for WED.

I have to see a doctor every 3-5 months, for two years almost it was every month, and I imagine if I switched doctors, I would start all over again at every month. It's a significant blow to my freedom and spontanaeity, and I was SOOO pissed off about it for a long time. But just suck it up and get over it, we all have to eat a bit of crap.

You might like this new one, I have no idea why they felt they had to add the naloxone, but I bet it was more to reduce abuse potential than to prevent constipation. Anyway, it's a scientific study documented the effectiveness of an opioid in WED. Prolonged release oxycodone-naloxone for treatment of severe restless legs syndrome after failure of previous treatment: a double-blind, randomised, placebo-controlled trial with an open-label extension
viewtopic.php?f=4&t=8641&p=72184&hilit=naloxone#p72184

Also, there is a paper by Walters I will try to find, in which he discusses the abuse rates of WED patients on methadone over many years. Hmm all I have is the abstract:

http://www.medscape.com/medline/abstract/11748742
Long-term follow-up on restless legs syndrome patients treated with opioids.
Mov Disord. 2001; 16(6):1105-9 (ISSN: 0885-3185)
Walters AS; Winkelmann J; Trenkwalder C; Fry JM; Kataria V; Wagner M; Sharma R; Hening W; Li L
New Jersey Neuroscience Institute at JFK Medical Center Edison, New Jersey 08818, USA. artumdnj@aol.com
The medical records of 493 patients with restless legs syndrome (RLS) from three major centers were studied to determine the number and outcome of patients who had been treated with opioids as a monotherapy. At one time or another 113 patients (51 men, 62 women; age range, 37-88 years) had been on opioid therapy either alone (36 patients) or with opioids added secondarily to other medications used to treat RLS (77 patients). Twenty-three of the 36 opioid monotherapy patients had failed dopaminergic and other therapeutic agents prior to the initiation of opioid monotherapy. Twenty of the 36 opioid monotherapy patients continue on monotherapy for an average of 5 years 11 months (range, 1-23 years), despite their knowledge of the availability of other therapies. Of the 16 patients who discontinued opioids as a sole therapy, the medication was discontinued in only one case because of problems related to addiction and tolerance. Polysomnography on seven patients performed after an average of 7 years 1 month of opioid monotherapy (range, 1-15 years) showed a tendency toward an improvement in all leg parameters and associated arousals (decrease in PLMS index, PLMS arousal index, and PLM while awake index) as well as all sleep parameters (increase in stages 3 and 4 and REM sleep, total sleep time, sleep efficiency, and decrease in sleep latency). Two of these seven patients developed sleep apnea and a third patient had worsening of preexisting apnea. Opioids seem to have long-term effectiveness in the treatment of RLS and PLMS, but patients on long-term opioid therapy should be clinically or polysomnographically monitored periodically for the development of sleep apnea.


Also there are morphine pumps being used... viewtopic.php?f=4&t=8679&p=72393&hilit=morphine+pump#p72393

[debbluebird]

Have you tried a sleep doctor ? They are usually open to our problems.

[Neco]

I haven't ever tried any specialist.

Number one because of the potential cost involved; I do not have insurance.. I still don't know what kind of cost going to this other clinic involves and finding insurance is turning out to be a pain in the **** since our illustrious government failed to confirm my own identity.....

Also, I'd never had a need to go elsewhere beforehand. No other doctor I delt with outside of my original doctor, ever tried to force me out of the clinic or on to a specialist.

That's my biggest concern right now.. is what if I go in there, and they just say "no" or "we can help you but not with narcotics" or something... I've been through all that other crap. It doesn't work for me! Refractory RLS is not a joke in this regard... Either that or its a terrible one created by one prick of a deity

[ViewsAskew]

With the new healthcare law, I'm guessing (based on what you've said about how much you make) that you'd not have to pay a lot for insurance = but there always is a deductible. The exchanges work well (I used them) and finally have insurance myself. There is a calculator on some website that tells you how much the government subsidy would be based on your income level.

I've been forced out twice now. It really sux.

[badnights]

I'm sure you'll get insured, thought it's unfortunate that it's taking time and being troublesome.

Try not to borrow trouble from a future that's not here yet; things are just as likely to work out fine as not.

It's a pain clinic, you're in pain;
you have a boatload of peer-reviewed medical literature to provide them with in case they aren't familiar with WED; and
you''re articulate and well-spoken, so you'll be able to explain yourself as many times as it takes and in as many ways as it takes while your new doctor(s) and nurses learn about WED.

You can go there with a patient confidence in your heart, because you know you have everything you need to work this out.

[jul2873]

Zach, I am so sorry for the difficulties you are having, and so angry at the crazy way our country deals with people who truly need opioids. I hope you manage to find a good, affordable doctor soon.

Meanwhile, you might read this thread on kratom, a mild, legal, non-prescription opioid. There are a couple of us who have found that it works fine for us. It is all we use. viewtopic.php?f=1&t=8376

Good luck to you!

Mary

[Neco]

Interesting. I had heard of Kratom here and there, but never really looked into it.. Figured it was just another one of those "legal high" fad herbs. Although I was at one point interested in finding reputable sales sites, and possibly trying it if I could find it for a good price.

[jul2873]

Hi Zach,

I get mine from Velvet Soul http://velvetsoulkratom.com/home. They were selling on Amazon for awhile, which is how I found them. I find their kratom to be the best I've had so far (i.e. very finely ground--no stems in it). I got their Maeng Da for awhile, but have switched to their Borneo Red Vein, which isn't quite as strong but is more sedating. Someone I've met on this news group who is also using kratom gets hers from Bikhuk and also uses the Borneo Red Vein. We both get the powder, which is way cheaper than buying capsules. Plus I think the kratom is fresher. And we have both bought one of those capsule filling devices on Amazon to make capsules for travel.

Anyway, good luck. I hope you find something that works for you, and that you can get!

Mary

[ViewsAskew]

Interesting. I had heard of Kratom here and there, but never really looked into it.. Figured it was just another one of those "legal high" fad herbs. Although I was at one point interested in finding reputable sales sites, and possibly trying it if I could find it for a good price.

Zach, I'd be very careful about this....you have told us before that you have abused opioids in the past and that even with methadone, you have had your father keep them so you don't use more than you should.

You, I'm sure, know that there will not be a standardized amount in what you buy - which could be more than you want at times, and could trigger some self-destructive behavior. Please be careful! Y

[Neco]

Yes, I'm very well aware of this..

Funny thing about that though. I've been successfully managing my bottles for a few months now. Not quite where I want to be yet, but doing very well with it actually. Of course this whole situation I'm in has me going back to look at any alternative I can find that might work.