Thanksgiving and a Question

[Jrskyhook32]

I thank God for this website every day since I found it. I was at my lowest of low points with RLS this summer. I had to take a leave of absence from my teaching job. I was going through augmentation and withdrawl from requip at the same time.My doctors at Johns Hopkins were not helping. They didnt warn me sufficiently about the danger of withdrawing from requip. When I couldnt sleep for 3 days straight I kept walking i circles all night until I fell over. I was a zombie. I found this site and you good people and starting asking for advice. I learned so much!Im down from 8-12 mg of requip to a 2 mg neupro patch. Im on 5mg methadone. Im back to work and I have a ew doctor that is listening to me. Im not cured, I still have issues, but I can sleep most nights and Im making money again doing what I love...

Why after all the painful stories about dopamine meds are doctors still allowed to prescribe them? Why arnt they monitored? Why was I allowed to take so much? Why was I given an 8mg neupro patch at first? Cant we do something about these dopamine drugs and the doctors that prescribe them?

[Hidden]

Firstly, hi.

Secondly, I'm glad you're doing better and are back to doing what you love.

Thirdly, I hear you about the DAs. They can be heavenly until they stop working. Maybe they're kept on the market because people have reported getting relief for up to many years? That and money, I guess.

[Hidden in reply to Hidden]

I cant see the DA's being removed from the market as they are used for Parkinson's Disease.

[Hidden in reply to Hidden]

Oh yeah, forgot that one.🙂

[Madlegs1]

If you have been badly prescribed, or treated extremely badly, by medical professionals, it is open to you to sue them.

This is probably a lot easier to achieve in the USA - and I'm sure there are plenty of "no foal no fee" practices available in the phone book.

Unfortunately, legal routes are the only way we can change attitudes. Education simply does not work.

If you feel strongly about this, then there is such an option open to you.

I am genuinely sorry to have to give this advice, but your story is not that rare.

I'm delighted you have got help and comfort from this site.

Good luck.

[involuntarydancer in reply to Madlegs1]

Establishing medical negligence can be tricky - certainly on this side of the atlantic (ireland) but 8mg neupro as a starting dose really does seem to be negligent. The difficulty might be getting the court to appreciate the level of suffering attendant on withdrawal from these drugs so as to sound in damages. Doctors are seemingly incapable of grasping it so it is going to be an uphill struggle to get a court to grasp the acute torture of the process.

I am scarlet about the 'no foal no fee' saying. I always thought it was 'no fold no fee' (in spite of being in the legal profession) - it's no wonder I couldn't understand the point of it.

[Madlegs1 in reply to involuntarydancer]

Brilliant! Ye're obviously not from farming stock! Blooming Dubs!🙄

I would imagine there are plenty of young lawyers in US who would be happy to make a name for themselves.

Usually ( at least in Ireland) it is difficult to get one doctor to give evidence or opinion against another.

Hence we have to go to the UK. What on earth will we do after Brexit!🙄

[involuntarydancer in reply to Madlegs1]

Are not all the UK doctors intending to migrate here after Brexit?

[Madlegs1 in reply to involuntarydancer]

Well- they're getting the passports amyway!😁

[Joolsg in reply to Madlegs1]

Got mine last year( Da from Mayo) & getting the kids’ next year. Bloody Brexit!

[Pam34 in reply to involuntarydancer]

I can’t say I’d blame them! What a mess 😱

[RLSgirl]

Wow, that is disturbing to hear how you were treated at John’s Hopkins. They are supposed to be one of the leaders in RLS! In fact I was thinking of trying to go there myself since I can’t find any good help from the doctors around where I live.

As to why they are still giving people DAs, I think there are a few reasons. First off I think that many docs just don’t keep up with the most current info about RLS. They are prescribing these based on one standards. And I don’t think most Docs realize how awful both augmentation and withdrawal form DAs are. I know when I talked to my Doc about it and my possible need for opioid help during the process I got some blank stares and no help. Also, since in the US there is a war on Opioids, Docs are afraid to prescribe them, so they keep sticking with the DAs. On a final note, Doctors are given next to no training on nutrition and alternative therapies to drug treatment. The only thing they are really trained in is drug therapy, which is essentially symptom management. They have next to nothing to offer in the way of actually healing the body/gut/nervous system back to health.

As you have already touched on, the people who are suffering from this disease and doing their own research are much more knowledgeable about both the drug therapies and alternative health treatments then any doctor I’ve ever had the privilege to know. And a lot of them are learning to manage their symptoms through nutrition, and possibly even reverse the severity through healing.

[Cantstopwontstop in reply to RLSgirl]

So much truth.

[Hidden in reply to RLSgirl]

Love your replies; you make a lot of sense! Are you in the medical field?

[Windwalker]

I have written at length about the lack of quality, of the U.S. Medical profession. If you mention RLS to an American doctor the will look puzzled and do nothing. If you ask a Neurologist about RLS they will do a sleep study and diagnose sleep apnea of one kind or another or maybe ask you if you know what you want and if you are a real knowledgable person and ask for Methadone or an opiate they tell you it ain't happening. Next we will try this and then that with self supervision. After limping along maybe you will find a doctor who is good at their job (rare) and if you haven't jumped off a bridge or highrise bldg. already Maybe you'll stumble onto a solution yourself.

I am aware that Methadone works, but you need to be in a supervised setting with restraints, starting with a high dose to get started detoxing from the junk the bad doctors prescribed. As you are detoxed a gradual dose reduction is in order and as you start down the withdrawal won't hurt. If you can sleep without jumping and jerking you will finally find the proper dose of methadone, usually 5 mg. Now here is the rub. You have spent thousands getting to where you need to be and there isn't but a handful of doctors who has the balls to buck the state ''regulators of Controlled substances'' to help patients.

Most people who have found the 5mg level working, are ex heroin addicts, whose methadone clinic got them sober and regulated. These ex addicts almost never finds a doctor that will write a Prescription for this low cost drug and they keep going to the Clinic paying a ridiculous amount to get what they need.

[mmb8083]

Totally agree with you. Seems like doctors ( well mine anyway) just handed me a script for Recuip and said "here this will help" with no mention whatsoever about augmentation (at the time I had no idea of what that even was, didn't know until I found this site). When augmentation reared its ugly head 8 months later and the horrendous withdrawal process that followed I would often think, Why are dopamine antagonists not taken off the market and why are doctors still prescribing them. I'm willing to bet none of the doctors handing out these scripts ever endured the horror of trying to get off of them .