Update

[Betty/WV]

Robin: As to asking the Dr. for samples. I don't know where you live, I am here in West Virginia, USA. I used to always get samples from my doctors when I could. I don't know why but it is now hard to get samples... The doctors don't seem to have them as much as they used too. Also, when I used to go to the doctors I would see the drug reps. coming into the office to see the doctor with their samples. This was a regular occurance. Now you never see a drug rep when you are in a Dr.'s office. My cardiologist always had a sign on the door (inside) of the exam room, "If you take any of these meds. (then a list of different meds) ask the nurse for samples." That sign is no longer there. Does anyone know why this change????

BETTY/WV

[ViewsAskew]

Robin: As to asking the Dr. for samples. I don't know where you live, I am here in West Virginia, USA. I used to always get samples from my doctors when I could. I don't know why but it is now hard to get samples... The doctors don't seem to have them as much as they used too. Also, when I used to go to the doctors I would see the drug reps. coming into the office to see the doctor with their samples. This was a regular occurance. Now you never see a drug rep when you are in a Dr.'s office. My cardiologist always had a sign on the door (inside) of the exam room, "If you take any of these meds. (then a list of different meds) ask the nurse for samples." That sign is no longer there. Does anyone know why this change????

BETTY/WV

Dr B mentioned that to me that last time I was there. He said they do not get as many samples anymore. I think he told me why, but I don't remember what he said.

[ViewsAskew]

I'm so appreciative of your posts. Yes, I have 2 of Dr. B's books plus a couple other books on WED/RLS.

That was a good idea, Ann, about creating a goal for my Dr.'s appt. Really my problem isn't just the WED/RLS, since I have multiple ailments, arthritis, fibro., heart, high blood pressure, high cholestrol, hiatal hernia. So half the time I don't know what is bothering me the most. I have doctors for the other ailments. And I take so much medicine already, I don't want to add any more to it And sometimes I think some of the medicine I take is part of my problem. This neurololgist will only deal with my WED/RLS. So I guess my goal would be just to be able to cope with day to day life. I don't think there is a complete solution. If I just weren't so tired all the time, and felt like doing the ordinary things that I used too. But of course, to a limited degree. And since I have this apprehension about medicine, I have a fear of trying something else. Such as the Neupro Patch I think the Horizant is out, since it is just a long acting neurotin, and I have been on the neurontin and it didn't help at all.

I have written down the most important things I want to stress to the Dr.
The compulsions, sexual and eating.
Not getting dressed, being so tired and of course all this leads to depression.
I did mention these things to him But maybe I need to stress them more. When I mentioned the depression, he ask me if I ever thought of suicide I told him no, because I never have. So I think he was paying attention. And it was my first visit to this doctor. The second visit should give me a better idea of what he is like.

So I will apply some of the suggestions you all have offered. I will keep you updated. I thank you so much.

BETTY/WV

Betty, a relatively new type of doctor is one who could actually help you with this. It's called a psychopharmacologist. As I understand it, it's often a psychiatrist who specializes in how medications affect a person. They can help look at the interactions and see if things may be causing problems. A few years ago, I only saw a few of these doctors in my area. Recently I looked and there were many more.

[aveerik]

Betty I am in Portland Oregon. I guess things have changed as far as samples go. My son is 15 tomorrow so it has been a long time since I have worked in the field. I just never thought that aspect would change as it is how the drug companies made it easy for doctors to prescribe their meds. I was there during the change of how drug reps couldn't take us out to dinner unless it was for continuing education purposes, and no longer take doctors golfing, on trips etc.
It seems you have a better grip on what you want to achieve but don't let it get you to down if it doesn't go perfectly. I like how doctors think it is okay if you are depressed, not sleeping, and not getting dressed as long as you are not suicidal.
I think the psychopharmacologist sounds like a great idea as many of your symptoms could be side effects of your meds or interactions between some of them. Many times a med will be prescribed only because it is counter acting the side effect of a medicine that you aren't tolerating well.
Good luck

[badnights]

Betty, how did your appointment go?

How much Mirapex are you on? Did you tell him you're experiencing compulsions because of the mirapex and might be augmenting?

How did it go? Where are you?

[Betty/WV]

0.25 mg twice a day and I did tell him about the compulsions. He has had a sonagram done checking for a blood clot in my leg (where I have pain). Did blood work. Sed rate was high---58 --should have been below 30. Has rechecked the sed rate, don't have results yet. Also I am having a whole body bone scan Friday. My GP has given me vicodin for when I need it. So far, I am pleased with this doctor, its a wait and see thing. I am in Northern West Virginia. I think he is doing the bone scan because I have pain in my upper arm, calve of right leg, on the tops of my feet. I have arthritis, Fibro and the monster WED/RLS. plus stents in my heart etc. etc. etc.

thanks for your concern. Wish you well.

BETTY/WV

[aveerik]

I hope things continue to go well for you Betty.

[Betty/WV]

Thank you, aveerik; I was a little anxious about having the bone scan done, as I have to lie very still for about an hour as a camera goes over my body. It would be impossible for me to lie still that long. As anyone with WED/RLS would know. So I called the doctor (you wouldn't think I would have to explain that to him) and he gave me adavan to take before the scan. You really have to be your own advocate and be on top of everything. I make lots of notes. LOL
I'll let you know how it goes and what they find.

[ViewsAskew]

Glad the doctor helped you get through the test - I can't imagine taking a test like that without medication!

[Polar Bear]

Good luck Betty, and well done for speaking up about having to be still for so long for the bone scan.

[badnights]

Betty, you're absolutely right, you have to be your own advocate.

I can see what happened is that you have so many issues and pains, your doctor has had to choose which to deal with, and has chosen the arm and leg pains, probably based on your emphasis during the appointment. If you want to get off the Mirapex which is causing compulsive behavior and ill health from overeating, you will need to make a separate appointment simply to address your WED and its treatment.

[Betty/WV]

Hi Beth: I think the doctor has taken the right path. I think once he gets all the results of these tests he has scheduled, then he will go from there. He has suggested changing my Mirapex. Only thing is the Neupro Patch and Horizant have the same side effects as Mirapex. "One Day At a Time" As an old hymn said. . And I understand the Neupro and Horizant are extremely expensive. And probably they aren't on some formularies. Isn't life exciting????????
Anyway, the whole body bone scan was a breeze. It was just the 3 hour wait in between the injection and the actual scan but I took some reading and crocheting and had coffee so it wasn't that bad. I find it strange as I sit here at the computer that my legs are as calm as can be. It is 5:15am and I just got u p. But at other times I have to stand up to type.

I'm so thankful for people on this site (like you) that understand what I'm talking about. Because no one else does. I see my doctor on the 29th and my GP on the 28th so I'll let you all know what I find out. Thanks again.

BETTY/WV

[ViewsAskew]

You are SO right - Horizant and Neupro are not on some formularies and are very expensive. I was able to get them to agree to give me Neupro because my doctor wrote that it was required because the other ones didn't work. But, it still cost $80 with my insurance. And, then, it didn't work for me anyway!

I honestly would hope that your doctor would consider a 1 to 2 month holiday from all DAs. If he would try an opioid for a month or two, you could then assess how everything is. If you haven't tried Lyrica or gabapentin, I'd try those before Horizant. While they are not identical, if you have no problems with either of them, you are less likely to have trouble with Horizant. Or, if the work OK, but not great, you'd know that Horizant might work better.

You could also switch, after a break, to Requip. It may not cause the same side effects as pramipexole because it works on different receptors. Sure, it might be the same, but for many people they work differently.

[Betty/WV]

I have tried neurontin and it did nothing for me, so the doctor took me off it....Sometimes I would just like to SCREAM. I'm 77 and I am tired of dealing with this. And no one realizes what I'm dealing with. I think mainly the pain is fibro and arthritis. I've been diagnosed with both. But I certainly don't want to add more meds to what I am already taking. . I don't know if there is an answer. I guess I'll wait and see what the doctor says about the tests I've taken. Take care.

BETTY/WV

[jul2873]

Hi Betty,

Please keep in mind that I'm not a doctor, but I wanted to respond to your cry for help. We are close to the same age (I'm 69) and like you, am tired of dealing with this illness. A few of us on here are using a herbal drug called kratom. It's a mild opioid that is grown in places like Indonesia and Malaysia. We order--usually the powdered form--on the internet (lots of internet places you can order from) and then mix it in a little juice to drink it. I use a half of a tsp. several times a night. A half a tsp is about half a gram, and I usually use about two grams a night.

I know that this is a drug that hasn't been tested or approved. But I'm at the place in my life where I feel like I have no good options, only less bad ones. I'm also at the place in my life where I don't have to worry about long term damage. I'm hoping for ten more good years--twenty more if I'm incredibly lucky. But I don't have to worry about getting pregnant, or even going to work now. So I think this makes me more willing to try new things. I'm not someone who has ever done drugs. I've never even tried pot.

The kratom works well for me. At night I'm still up every two or three hours, but at least, with another dose of kratom, I can go back to sleep, usually within twenty or thirty minutes, often right away. So I can piece together six to seven hours of sleep. If I can get in a nap as well, that's enough for me. When I fly across country or to Hawaii to visit children and grandchildren, higher doses can keep away almost all symptoms. Perhaps I could sleep through the night with higher doses, but I don't want to build up a tolerance too quickly--and realistically I've never slept through the night anyway since my last child was born, many years ago. The only side effect I get is occasional constipation, which I understand is very common with opioids. Over-the-counter stuff treats that easily.

Just a suggestion. All the best to you,

Mary