New Doctor

Sleuth · Post by **Sleuth** » Thu Apr 23, 2009 11:37 pm

On March 30, I had my first appointment with a new doctor. She wanted me to meet with a psychiatrist she worked with and take a blood test. I took the blood test the week after. My iron count is very low...11. The doctor said it should be 50. She talked to me about coming into the hospital for a day or two for an iron intraveneous treatment. I was open to that.

I had a hard time getting together with the psychiatrist. She has no secretary and took some time to return my call. I finally met with her this Tuesday morning. She also discussed the iron intraveneous treatment.

I've emailed the doctor and left a message for her to call me. I want to know what is next. She has not responded to either.

It is now almost 4 weeks since that first appointment. I still don't know the course of treatment she plans nor have I been given any medication. I am upset. I went to her because I am suffering so with the RLS, which I basically have 24/7.

I wonder if she has not called me back because of my depression. I had the same issue with the first doctor I saw. He was more concerned that I take care of my depression with my psychiatrist before he would treat my RLS.

I don't know what to do. I want to email this new doctor to ask her why she hasn't got back to me and why I still don't know what she has planned for my RLS after almost 4 weeks.

Am I overreacting?

Thanks.

mackjergens · Post by **mackjergens** » Fri Apr 24, 2009 2:27 am

No you are not over reacting. You need to explain to your dr that you are sleep deprived!!! and if you could sleep, you think it would take care of your depression. My Dr thought I was depressed also, but I have never been depressed, just sleep deprived that made me appear depressed. I had to actually change Drs before I found help.

Try explaining to her about being so sleep deprived due to your rls and suggest she try giving you something to let you sleep and then see if that lifts the depression she is seeing in you.

Call and talk with her nurse and ask that she please get back with you soon!! or call the psychiatrist and talk to her about being sleep deprived and ask that she call your dr and try getting some type of help for your rls. Just dont give up!! There is help for rls

SquirmingSusan · Post by **SquirmingSusan** » Fri Apr 24, 2009 5:49 am

No, you're not overreacting. Your doctors are "under reacting." Keep bugging them until they respond. It's just crazy that doctors ignore patients' phone calls and emails, when the patients are suffering. Hang in there.

Aiken · Post by **Aiken** » Fri Apr 24, 2009 9:59 pm

A doctor who doesn't respond to multiple contact attempts is a doctor who needs firing. Pure and simple.

I would, anyway.

Post by **ViewsAskew** » Sat Apr 25, 2009 2:02 am

If I felt she listened and "got" RLS, I'd call and clearly explain that I needed more help and I needed it quickly. I'd ask for her commitment. Then I'd see what happened. I definitely would not think anyone was overreacting if this happened.

woodsie357 · Post by **woodsie357** » Sat Apr 25, 2009 4:59 am

If my calls were not returned, I think I'd drive to the office. I'd be patient and just say I've not been able to get through on the phone. Or I'd call and make an appointment where I got time to see the Dr face to face. I recently did this with my family doctor and was very happy that I did.

I hope you get some help soon, one month of waiting with RLS that's utter torture!

Sleuth · Post by **Sleuth** » Sat Apr 25, 2009 9:11 am

She returned my call yesterday morning, but I wasn't home. I could barely make out what she said on the answering machine. I called back and left a message that I had to talk to her. She never returned my call.

I'm sure she knows how much I'm suffering, so I can only assume that is not important to her. This attitude is not comforting to me. She has no sense of urgency about this at all. It's a very laid back attitude.

Quite honestly, this has been the attitude of every doctor I've seen about this condition. I get the feeling that they know there is little, if anything, then can be done to help me, so why rush. It's hard to keep your spirits and all your chins up when you're treated like this by the medical profession. I am really very distraught by this.

I am sending her a letter this weekend. I can't just drop in because I won't get to see her. It is hard and time consuming for me to get to the hospital where her office is. It couldn't be in a worse place, but if I have an appointment I go. I wouldn't do it on the hope of catching her for a few minutes.

Dale

dogeyed · Post by **dogeyed** » Sat Apr 25, 2009 10:14 am

First of all, this new doc should have set you up with a followup appointment, because she needs to know how you felt after you got the iron infusion. If she met with you after the infusion, we'd like to know what she said.

Anyhow, these days, the only way to talk to a doc is to set up an appointment with her, plain and simple. Then when you see her, you can thoroughly discuss your sleep issues, whether you need to go back to the psychologist or not, if you need to be put on a medication for your RLS discomfort, and so forth. Sometimes the only way to see a doc is to have a bona fide appointment.

If the appointment is some months away, heaven forbid, begin to search for a new doc, maybe an internal medicine group that you can make as your regular family type doc, set up maybe two or three appointments a few weeks apart right off the bat, so you'll be sure to be seen often in the beginning, until they can get your meds straight.

By the way, do tell us how the iron infusion went. Also, remind us what exactly are you taking now, and what meds you still have some refills for.

Post by **Polar Bear** » Sat Apr 25, 2009 2:25 pm

No you are definitely not over reacting. I would be so made and frustrated and fighting for a face to face appointment. And of course you should have to fight for an appointment anyway. I understand that it is not easy for you to get to an appt but it sounds like that is what it will take. Cards on the table.... maybe if doc gets another chance to 'understand' the relationship can be resolved.

I really feel for you at the moment. When we need help and treatment, we need it now!!

Sleuth · Post by **Sleuth** » Sun Apr 26, 2009 12:34 am

I haven't had the infusion. I haven't had any treatment at all with this new doctor. She wanted to try the infusion, but has done nothing about arranging for it.

I have a lot of doctors right now, but none are qualified to give RLS meds. They know nothing about the illness. That is why I have been going to specialists in the field.

Even if I went to John Hopkins, I would need a doctor here in NY to administer meds. I don't have anyone who can do that.

I am losing hope.

Dale

Neco · Post by **Neco** » Sun Apr 26, 2009 12:39 am

Who told you they need to be "qualified"?

That's BS.. ANY doctor can give out pretty much any of the medications used to treat RLS.. Whether its Requip, Mirapex, Neurontin, Lyrica, Xanax, Valium, or any one of the number of opiate painkillers.

As long as they have a prescribing license they can dispense any of these if they really want to.. If its lack of experience, well they won't get any by turning away RLS patients either...

Sleuth · Post by **Sleuth** » Sun Apr 26, 2009 1:59 am

Am I supposed to tell them what to prescribe? I don't know how it works. So far, other than the one doctor I saw who prescribed the Mirapax, I haven't found anyone who is willing to give me anything.

I am totally confused.

Dale

Post by **ViewsAskew** » Sun Apr 26, 2009 3:47 am

Dale, I think what you mean is that none of the doctors you have seen understand how to treat difficult RLS, is that right? You are looking for someone who totally understands RLS and how to treat it when it's difficult to treat and you're having trouble doing that.

Here's my two cents....

This doctor has seemed to understand it better than anyone you've seen. But, she's not been as involved as you need and want.

Again, just my two cents, but we don't know WHY she's not as involved as you need. It matters because she could be assuming something, too, and if you're both assuming, things may not happen the way that works well for you. I still screw up communication sometimes, but one thing that I've come to believe that works exceptionally well is to clarify EVERYTHING, leaving nothing to chance or assumption.

Please call her back. leave a message with her nurse. Make sure she understands the following:

1. You need to talk to her personally.
2. Two or three times that you will be available.
3. That you do not understand the plan of action and need her to tell you what and how she plans on helping you.
4. Ask the nurse to please let you know what the doctor says and when the doctor will call you back.

When she calls:
1. Tell her that you are not sleeping and that this is very hard for you.
2. Ask her if she is able and willing to work with you. If she is not, ask her for a recommendation, telling her that you must find someone who can help you.
3. If she is able and willing, ask her what her plan is. Tell her that you are willing to do what you need to, like see other doctors, but that you need to know what the options are and what she's planning on doing, both short term and long term.
4. Ask her when she can see you next to get this process started.

There may be more things that are important. Over the weekend, write out a checklist with your questions. As you have the conversation, check them off once you ask them. If she tries to steer the conversation another way, bring her back gently. It's not easy to do that with someone we feel has more power than we do, but it's necessary if you are to get what you need.

mackjergens · Post by **mackjergens** » Sun Apr 26, 2009 5:10 am

I would call her office and talk with the nurse and explain to her that the Dr.was going to setup an iron infusion, but you have not heard from her, and missed her call the other day, and Tell this nurse you are not sleeping at all and you NEED an answer to this problem .

Make sure you read and educate yourself all about RLS, know the list of meds used to treat rls, so you can discuss them with her. There is a very long list on www.rlshelp.org print it out and have it by the phone, so its available for discussion.

If she does not call you back in afew hrs call the office back again, just continue to call and leave a message saying you need help!

There is help available, do not give up, so many of us have gone thru years of dealing with rls and now have been able to find a med that helps us, the only problem is each med works differently on each person, so its trial and error to find the right med for you.

I know how lost you feel, as I walked the floor night for many many years, and now I do not have to do that, because I finally found meds that control my rls. and so can you!!
Do not give up. find another Dr if you have to!!!

dogeyed · Post by **dogeyed** » Sun Apr 26, 2009 10:24 am

Gosh, Sleuth, this thing is really goofed up!

Is the doc who prescribed the Mirapex still available? If so, maybe you can get in to see that doc. Tell that doc Mirapex didn't work, and to please prescribe something else... since they prescribed Mirapex, they will know what else might work.

Your psychiatrist, who I assume prescribed you the antidepressant, you COULD ask them to prescribe you SOMEthing for your RLS. You can tell her since Mirapex someone else prescribed didn't work, you've since heard that mild pain killers, like Tylenol-Codeine #3, help RLS a lot. You could ask her to give you a couple refills until you can finally get settled with the new doc. You can also ask the psych doc to give you some sleep meds, too. My psychiatrist has helped me with all sorts of medicines when no one else would. They are licensed to prescribe whatever you need, particularly when this is affecting your sense of well-being.

Until you get in to finally see the new doc, you can try getting some Iron supplements and see will they help, until you can get the infusion thing going. And I would not leave her office until she puts a prescription in your hand for at least a couple drugs to help with the RLS and some sleep meds, too. Cry if you have to, don't wear makeup when you go in, and you can print out all sorts of stuff on RLS to help her figure out what to give you. This website rls.org has some stuff, and so does this government website:
www.ninds.nih.gov/disorders/restless_le ... s_legs.htm

When your legs bother you in the daytime, put on some support hose, and when the construction next door drives you nuts, put some wadded up kleenex in your ears. The health food store has some "pain killer" stuff that might help, to include stuff for pain, sleep, relaxation, but they sometimes will give you a hangover, at least the ones I've tired in the distant past. But it's better than nothing.

Keep us updated on how things are going, we are so concerned about your really ruinous situation, and fully understand what you're going thru, child. It is a very, very hard disorder to have, this RLS, people just have no idea how bad it can get. But we do. GG