Furious....and scared

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ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Thu Jan 17, 2013 3:06 am

I got another email today from the office manager telling me I had to make an appointment. No mention of the script at all. I responded that I'd already made the appointment.
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.

rthom
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Re: Furious....and scared

Postby rthom » Thu Jan 17, 2013 4:53 am

I wnder if they have new staff or new protocols they want their staff to follow being the begining of a new year...? :think:

EeFall
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Re: Furious....and scared

Postby EeFall » Thu Jan 17, 2013 5:31 am

I emailed for my Methadone script tonight, it's like I don't have an appointment with the doc until the middle of March and I'm running out. Why doesn't he take care of this so I don't have to worry about it? I hate this situation with having to go see the doctor for scheduled controlled substances - what good does it do? Rhetorical. It would make life so much easier to have it refilled like any other medication. I mean even when it says No Refills Remaining on the bottle our pharmacy calls up the doc and they get it extended. It puts stress on the patient, patient's family, the doctor, doctor's staff because "they" are trying to protect us from the terrible drug that will turn us into reefer madness junkies :lol: - referring to a movie they showed us in middle school when I was a kid about how marijuana would turn us into these wild murderous savage junkies doing anything for a puff of a marijuana cigarette. It just sounds so funny now, and no I don't smoke pot, although I probably should :lol: . So I could have said - that sucks! - but I got carried away.

rthom
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Re: Furious....and scared

Postby rthom » Thu Jan 17, 2013 5:37 am

I hate to say it but this is exactly why I would not try the methdone, I fiured if I needed to go back on something else I would have trouble because everyone would assume the methadone was to help get me off instead of help deal with the WED. I just figured folks couldn't get past the stigma attached to it as a rule. It's ludacrist but the sad truth.

debbluebird
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Re: Furious....and scared

Postby debbluebird » Thu Jan 17, 2013 6:05 am

We go through the same thing every month, trying to get our scripts. For me it's the methadone and my husband takes oxycodone. We were having to see the doc every 3 months, and finally they have extended it to 6 months. So we leave a note at the front desk, they call us, and we pick it up. Well last month we hit a snag. The medical assistant calls and says, the pharmacy has to request the script. I say, they won't do that because it's a narcotic. She made me call the pharmacy anyway. I call. I call her back, and tell her, they won't do it. She calls the pharmacy, and tell her, they won't do it. She is an idiot. We are in a small town. We live two blocks from the clinic. I think that the people around here are always calling for the renewal scripts. They want people to notify the pharmacy, the pharmacy fax them. etc No matter what I said, she would not listen. I figure that the powers above her wanted her to get everyone to follow the rule. Finally she tells me we can leave our note, but we have to write out exactly what we need, the drug, how much, and when, etc. I figure the doc would have to check our charts, so I was just writting the name of the drug we need. I said to my husband, gee, we could write anything, any amount. He laughed. It would be the time when they would check our chart. Oh well.

DEB

ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Thu Jan 17, 2013 6:58 am

I can't even type anything without having to delete it - everything I can think to say wouldn't be appropriate.....
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.

rthom
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Re: Furious....and scared

Postby rthom » Thu Jan 17, 2013 7:02 am

I hear you.

Hope you can get to sleep soon.

ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Mon Jan 21, 2013 9:44 pm

Well, bad news on the doctor front. I guess I fired her, but only because I felt she pushed me to do it.

It didn't start well when my blood pressure was 40 points higher than its EVER been. It's always on the low side - 90-115 over 60-75. Today? 160 over 95!

On the way there, all I could think about was how hard everything has been in the last few years.
- I need $25,000 of dental work to put everything right
-My most recent business failed
-I'm in debt for the first time since my college loans were paid off - I haven't carried a balance on a credit card since 1994 when I paid off my MA degree. Now? I am at the limit on several cards
-I'm 50 pounds heavier than I was - thank you Mirapex.
-I have to rent a car to the tune of $30 just to get to the appointment and she's going to charge me $150 and I didn't even WANT the appointment


The list goes on and on and on. So, by the time I get there, I'm halfway in a panic. And I'm late because the car I rented wouldn't open (it's an electronic system) and I had to stand in 5 degree F weather calling them on my cellphone to get the car opened.

After the blood pressure shock, I waited about 15 minutes for her. She came in with a nurse practitioner. That seemed fine, but as the meeting went on, it was clear she was only there to be a witness. She did not participate.

Basically she isn't comfortable with me as a patient because she doesn't have the experience with tough cases. She doesn't know enough about it and hasn't had any other patients like me. I'm an anomaly and she isn't comfortable treating me. She wanted me to go through neurological tests to make sure I don't have something else. I asked her what I could possibly have - piriformis neuropathy she says. She said that it doesn't make sense that I still have symptoms sometimes - um, what severe RLS person doesn't have symptoms sometimes!!!!! She said methadone was dangerous - um, what about the 7 year study with methadone and RLS patients that showed there were no problems?

She wanted sleep study - it won't show RLS, I said. Yes, she said, but it could tell if I have PLMs with the methadone. So what if I do? I can't take a dopamine agonist! She wanted me to consider the Neurpro - at that time, I knew this was never going to work. What doctor would suggest a DA to someone who's augmented 3 or 4 times and on EVERY DA tried?

She was going to give me a two month script (and why she couldn't have done that two weeks ago instead of making me wait is a mystery) and IF and got the records from EVERY doctor I've seen and had them sent to her and IF I had a blood test and IF....

I asked her IF she'd talk to Dr B. She said she would be that he wouldn't tell her anything. I said he would because I gave him the authority to. But, even if he didn't talk about me as a patient, she could have learned something from him and she wasn't about to do that.

After it became clear that this wasn't going to work in the long term, I left. Got up, picked up my coat, and said that she wasn't the right doctor for me. Told her that it was really my fault - I kept trying to take a doctor who wasn't a specialist in severe RLS and turn them into a good doctor for me square peg, round hole. Of course I wasn't all that calm by that time. That was actually quite interesting - I was clearly upset and she did nothing to try to help. Nothing. And the nurse practitioner just sat there.

Who knows what I've forgotten - it was an action packed session! Of course, by walking out, I have no script. I just couldn't do it - she was treating me as if I didn't even have RLS. Right. Like 3 neurologists, a few sleep doctors, and Dr Buchfuhrer got it wrong fall all these years.
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.

debbluebird
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Re: Furious....and scared

Postby debbluebird » Mon Jan 21, 2013 10:05 pm

I'm so sorry. There's nothing else to say.

DEB

ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Mon Jan 21, 2013 10:39 pm

I just took my blood pressure here at home. It's down to 140/80. That's much better, but still not near what it should be. I guess I'll have to keep taking it for a few days to see if this is a thing I have to watch for or if it was just the stress of the day.
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.

rthom
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Re: Furious....and scared

Postby rthom » Mon Jan 21, 2013 11:28 pm

I don't know what to say--that's horrible Ann. Are there any other folks you might be able to try out? Maybe a young new dr would be more inclined to listen and be empathetic? Esp. listen to Dr. B and the neuro's? I know this doesn't help much but I just don't know what to say that might--sorry you are having it that horrible right now-- you know we are here for you

Polar Bear
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Re: Furious....and scared

Postby Polar Bear » Tue Jan 22, 2013 4:20 am

Ann, they sound like pretty cold fishes.... swinging brick for a heart.

Any chance of a telephone appointment with Dr B.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Tue Jan 22, 2013 4:53 am

I have three options.

I can see if I can get an appt in CA and fly out ASAP. This is the most expensive option. Guess it's a good thing I got this contract, huh? At least I have friends and family close by and can stay with them if I need to.

I can see if my old family doctor will see me. He's about 65 miles away (I moved), but he was the one I went to the last time everything blew up and I had no one to turn to. He worked with Dr B for at least two years. I only stopped seeing him because then the law required I have a monthly script and driving 130 miles each month for a script was crazy. After that, I found a local PC doc who also worked with Dr B, but after 2 years refused to write them anymore, then saw Dr B for about a year (one flight there, the rest through email/phone), then finally to this last sleep doctor.

I can try to find someone new. Over the past few years, I've contacted some doctors when I see they are doing research or writing about RLS/WED. SO far, not one has thought they could treat me. I honestly don't know where people like us go in the Chicago area - it's 8 million people! Some doctor here HAS to see patients with severe symptoms! But, there are no major gurus here, and no university or hospital doing research. I have no way of knowing if a doctor will agree to methadone.

Over the years, I've tried educating doctors. It doesn't work. Well, it works to an extent - but you can't make them into a Dr Rye, Becker, Lee, Buchfuhfer, etc. They just don't see enough patients and it starts to worry them.

She honestly thought that there was something wrong with me because the medications didn't have the symptoms under complete control. HELLO! That's why we're the 1%! She completely missed the boat about opioids. First she said what a terrible drug methadone was, that I could get addicted (not sure she knows addiction from tolerance). I reminded her that I've already been off it it and had no problems and reminded her of the Becker study that said when used by RLS patients for RLS, there were virtually no problem with addiction. Then she said there was no reason for opioids to work. WHAT!? Has she read ANY of the studies or literature? First, the endogenous opioid system has been implicated in studies. More importantly, not ONE of the drugs that exist have a reason to work - because we still don't know what causes it! Yeesh.

She, also, doesn't believe that my continued severe case is related to augmentation. It may not be. I can't prove it. But, those of us who are in the same boat would be hard pressed to come up with another reason. But, even if it's not, there are plenty of cases of people who's symptoms go from mild to severe in a short time frame. I was augmented for 18 months. Maybe it was natural disease progression. Regardless of the cause, it still is just RLS/WED and not anything else!

I've thought about it a lot through the day. I may have mentioned before that I am a volunteer mediator - resolve disputes in the court systems or that come to our mediation center. One of the fundamental truths is that when people resist something nd throw petty arguments before they'll agree to something (we call is resistance), it's always because they disagree in some fundamental way and they don't want to share the real reason. She made it clear that the other doctor (who owns the practice) has fundamental concerns about methadone. She agreed to it, and said she was OK with it after talking to Dr B, only because I alternated it with Mirapex. But, taking it everyday? She couldn't deal with that. To her, I'm in imminent danger of.....something. She believes it's a dangerous drug and that it shouldn't be used.

One of the the other things I realized is why I got so upset. I've just had enough and I felt so alone. If you count everyone I've seen, I've seen at least 12 doctors in less than ten years. Neurologists, sleep doctors, primary care - and where am I? In the same damn place I was the first time I logged into this board almost 8 years ago. I can go see Dr Trevor again and he'll believe me, but he doesn't know what to do. I'd really like to get a script for provigil, but I'll have to research it, explain it, and "sell" him on it. Not because he's inherently against me, just that this isn't his specialty - he's a family doctor! I want someone who gets this. Who can tell ME what do to. And, I really don't want to be on methadone full time anyway!

Unless I move or fly, guess that's not going to happen.
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.

ViewsAskew
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Re: Furious....and scared

Postby ViewsAskew » Tue Jan 22, 2013 4:54 am

Oh - forgot to say - Dr B won't do a phone appointment because I haven't seen him and 2-3 years. If I'd been out there in the last year, he would.
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.

ViewsAskew
Moderator
Posts: 15211
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Furious....and scared

Postby ViewsAskew » Tue Jan 22, 2013 4:58 am

Oh, forgot one more thing - the really important one - thank you to all of you. I appreciate your understanding and caring.
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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