More adventures with doctors

For everything and anything else not covered in the other RLS sections.
SquirmingSusan
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More adventures with doctors

Post by SquirmingSusan »

I talked with my daughter's psych nurse practitioner today about getting me in to see a psychiatrist, so I can get my antidepressant prescription changed to Welbutrin, because the Lexapro is making my legs go crazy. She gave me an 800 number to call, and told me that every psychiatrist in the system has one time slot per week open for emergencies, and to tell them that I'm suicidal and that I need to be seen. (Which is true.)

So, I called. They set up an appointment at 4:20 this afternoon. I was amazed. It worked! Until I got there and found out that they had made me an appointment with an internist. Like every internist I have seen so far, he was really clueless about refractory RLS, and told me that opiods are not an appropriate treatment for RLS. I asked him if he would just change my AD to Welbutrin, and he was OK with that, until he found our just how depressed I am. He made me call my husband and have him take me to the ER, where, he promised, I would be able to talk to a psychiatrist.

After 2 hours of pacing the halls of the hospital because my legs were starting to hurt, I asked how much longer, and if I would really be able to see a psychiatrist. The answer was, no they don't have a psychiatrist at the ER, I would be seen by an emergency medicine doctor and a social worker.

I told them, thank you very much, but I can go think suicidal thoughts at home, and at least have my RLS meds. So I left without seeing anyone - and without a prescription for a different AD. God knows if I have to talk to one more doctor who doesn't get the RLS/ sleep deprivation thing, I'm going to start staking doctors to fireant hills and torturing them!

I came home and ordered some Welbutrin online. I have an appoinment with my former family practice doctor on April 10. He used to be reasonable, so hopefully he hasn't joined the ranks of clueless doctors. I see the sleep doc on Wednesday, but he's pretty clueless too, once you get past the usual "normal" RLS stuff. I don't know why I bother with him. He does understant the need for opiods, though. Just doesn't give me enough for good relief.

Honestly, if I had a nickel for every time a doctor asked my why I wasn't taking Sinemet, I would be wealthy.

Meanwhile, I'm going on a trip on Friday and will be out of town for a few days at a workshop. Lots of sitting meditation stuff, though. I'll bring extra Vicodin for that! I'm packing an exercise ball to sit on, too.

Hang in there everyone, and I will too.

Susan

ViewsAskew
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Post by ViewsAskew »

I'm speechless.

Hope you keep hangin' in there. I wouldn't trade my "reasonable" GP in for anyone - I hope yours is just as reasonable. Maybe call him and ask to be put on a waiting list. Never know, someome might cancel on Monday and you'd be in.
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.

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 2:26 pm, edited 1 time in total.

D4
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Location: Illinois

Post by D4 »

Susan, I sure feel for you. I can't imagine an E.R. knowing someone might be suicidal and making them wait hours!

This disorder can truely drive you crazy. I know; I'm on the brink.

I wish you the best.

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi to all,

Geeeeezzzzzz what a post, it doesn't surprise me at all.
The hospitals and ERs are just not what they should be. Makes me wonder all the time about the oath they took and their hearts.
But there are crummy people in every area of life, doctors are no different, however, I often expect them to be.

I fought like all Heck for years to make my RLS doc WORK with me. I have choices I guess, there are other docs, but who knows RLS better than us. What person really wants to explain every time about an honest medical condition that comes first for many of us?
Docs don't understand that this is a form of torture. Maybe Dr. Rye really understands, as he too has RLS, but past that........uuuuuuuffffffffaaaaaaa
I've tried in the past to give them a chance to understand using the whole remember not sleeping during residency? But they have no clue what it is like to not get a break. They assume we are blowing it up to be bigger or we are "one of those always sick or ill" people.
All we really want is our lives back or somewhat closer to normal.
I know Ruby, normal is for washing machines.....LOL :D

Since the first of Feb. I've been chasing my medical Normal and with little luck. It's not my RLS, something else, but in having to talk to so many of these doctors and nurses, I'm just at my wits end with them.
I left the ER about a month ago just insane with anger. I also wrote a letter to the Director of the Hospital. I'm not silent and I'm not too shameful about it. I pay them, they don't pay me.
I have RLS and it comes first unless it can't. Make sense? But from it can't listen to me. I really know my own body and I know what it can and cannot do.
If they will not listen, I get a bit more firm and gently ( :D) bring to their attention that I sign the front of the check and I need them to partner with me. I am careful to say that I wish that they would listen to me, not listen for catch phrases, as they tend to do. It takes longer to say that, but I don't let them talk until I'm finished and I expect a response from them.

I'm done being "handled" by them. I have no problem letting them know if their staff sux or their service.
My charm is wearing off! LOL
Wait maybe I never had it? LOL
I hope everyone finds the right doctor, if not a trainable one!

Hugs
Lynne

SquirmingSusan
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Post by SquirmingSusan »

Thanks gang. I knew you would all understand. We've all been there, haven't we. I'm noticing more and more how desperate people are when they introduce themselves in this forum.

I know I could get on the waiting list for my doctor, but this week is filling up fast. Monday my 15-year-old son flies to New York City for a school choir tour. We need to get him packed and ready. Tuesday, my daughter has an appointment with her surgeon, for a check of her innards. Wednesday morning I see the sleep doctor. Thursday morning I fly to Atlanta, where I'll be doing some training in the personality system that I teach and work with. I'll have a free day there to catch a Greyline tour or something, too.

Meanwhile I'm going to start going to a self help group for emotional issues. It's 12-step, spiritually based, and has done wonders for me in the past. Obviously the doctors aren't providing the answers for me right now, so I'll take it to the top - to God. And take it a day at a time and relax.

Thanks for being here. I love you all.

Susan

SquirmingSusan
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Post by SquirmingSusan »

Good for you Lynne for sticking up for yourself with the doctors and the hospital! You're my hero.

Well, you're all my heroes here. :wink:

Susan

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

I don't think I'm a hero, just over 40 and over being not heard. I actually interview my doctors. I figure it's a fair thing to do, they interview me all the time....my health, my finacial status, my personal information, so I flip it on any new doctors I have to see.
Where did you grow up?
Where did you go to school?
Married?
Kids.......?
It gets worse the longer I wait. LOL
I'm also really bad to not want to give information to a person that answers the phones. I can't talk to the doc, so give me to his or her nurse.
And when that does not happen I tell the doctor his or her staff sux. LOL

I love that saying " I sign the front of the check." That just cracks me up and it never fails to get someone's attention. I'm a bad girl, wait, jsut willing to share my opinion maybe! HA HA HA

I don't think I said it, I'm not shocked you waited that long.....somehow that thought is real but so wrong. Susan, you could go back and read my post and yes, hopeless and desperate they were. It happens off and on depending on the RLS, mostly the sleep thing gets me.
We're here for you and that never goes away.
I'll take it to the moon, God, and my prayers are with you.
I've learned more than I could have hoped for from those right here.
Hope. I hope we all find a day we never need, NEED, this board for anything other than fun.
Until then the family holds us strong here.
Hugs and a moon full of hope and love,
Lynne

D4
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Location: Illinois

Post by D4 »

Susan, your idea of starting a self-help group for emotional issues is a great one.

I think you read one of my posts where I went to a psychologist last week because the lack of real sleep had really gotten to me. I felt like I was going crazy. Although I wasn't sure how helpful it was when I walked out of his office, I've used some of his suggestions and my husband has seen a noticeable improvement in me in just this one week. I've also felt a bit better. But I'm still counting down the weeks until I go to Mayo Clinic.

ctravel12
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Post by ctravel12 »

SquirmingSusan wrote:Thanks gang.

Meanwhile I'm going to start going to a self help group for emotional issues. It's 12-step, spiritually based, and has done wonders for me in the past. Obviously the doctors aren't providing the answers for me right now, so I'll take it to the top - to God. And take it a day at a time and relax.

Thanks for being here. I love you all.

Susan


Susan let us know how the self help group goes for you. My prayers are with you and hope that everything works out good for you.

Hi D4 keep us posted on how it goes at the Mayo Clinic. My prayers are with you also.

You both have a good day and I know that God will guide you in the right direction.
Charlene
Taking one day at a time

stitch
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Post by stitch »

Susan and All my friends,

When I finished reading all the posts I found myself crying, something I have been doing alot of lately. I wish I knew why!

Susan I am back on Wellbutrin I guess it's working but they changed so many of my meds at 1 time. I read something about Lyrica today and I don't have either of the things they were talking about but my RLS has stopped and I do sleep at nite thanks to clonapen. I am wondering if it is the Lyrica that makes me want to cry all the time.

It's not helping my back, in fact it is so much worse lately. I think I am going to call the pain dr back this week after seeing him yesterday the 23rd and see if I can go back to my Neurontin.

My regular dr doesn't know much about RLS but he listens and knows I can't take some meds because of the RLS, but at least he trys. I think doctors should have to go back to classes for things that was not taught in med school but is now known condition.

All ER's make you wait but our little hospital has a "you will be seen in 30 minutes wait." Or someone will see you in 30 mins and maybe come back an hour later, I don't know because I have not needed the ER but almost took hubby there yesterday.

It is so upsetting when you feel like you know more then the doctors or you know you know more when it comes to RLS. For me there are days that I think what dr should I call? I guess my surgeon has done all he can do, so it's the pain dr and right now I have a paper asking me to rate my pain as to what I can do, in how long can I sit,stand,walk etc and for me all the answers will be the highest #. I have the double problem, RLS, back surgeries and pain, pain, PAIN.

Do you think we will ever get our questions answered and the help we need or I should say the RESPECT we deserve because we are the unlucky people to have a condition called RESTLESS LEGS SYNDRONE.

For me I just want the RLS to stay gone and some relief with the pain in my back. And even at 70 to be able to live the life I could.

Does anyone have Dr B's e-mail, I was hoping he might have some insite on the stimulator they are talking about putting in me and if it will make the RLS worse.

Susan, I hope you get the help you need because I lived for years w/o sleep and a exhusband that didn't care and raising 3 boys. I did have an emotional break down when I was in my early 40's and ended up in the hospital. And yes, God is a good sourse and has so much information. I spend time with Him everyday.

I didn't mean to make this so long but I have never been one of few words.LOL Just read what I have typed and here I am crying again, something isn't right here. I am going to blame it on the Lyrica because that is a new drug for me. Pain and no sleep will do weird things to a person but then together with that throw in some RLS and WOW

I have missed posting here and my new friends. Take care Susan and all of us, and God will some how do the rest. I hope Dr B can give me an answer also. Love you all and need you all, Jeannie :cry: but wanting to :)

becat
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Post by becat »

Hi Stitch,
Hey Jan has one of those stimulator for her back.
She is out of town this weekend........

One of her daughters got married today. Yeah. However, she will be back tomorrow night and I'll PM her to follow up with your question.

I do know that she was told to wear hers a certain amount of time a day.
Her last check up the doctor told her to continue using it to help the healing and repair process.

She got hers the day we checked her out of the hospital. I can't understand why after so many surgeries they are just now talking about it.
Your right, so much new stuff and so many advances.........the continuing education is more than lacking.

I hope something helps soon....maybe the water PT will easy things up.

Hugs and I'll let Jan know about your post.
Lynne

cornelia

Post by cornelia »

Hi Stitch,

I think the crying spells are from the Lyrica. I am on Neurontin and from the moment I started it the crying spells came with it and never went. I'm still on Neurontin, because it helps with RLS. We have to make choices between which side effects we can live with and which not, I guess.

Corrie

ctravel12
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more adventures with doctors

Post by ctravel12 »

Hi Jeannie I just read your post and am so sorry for what you are going through. I tried to find Dr B's e-mail address for you. I have his address and telephone number. Maybe you can call and they will give it to you and also one of the members may have it.
Dr. Mark Buchfuhrer
11480 Brookshire Ave. Ste 108
Downey, Ca. 90241
562-904-1101

I hope that this helps you and that you are feeling better today.
Charlene
Taking one day at a time

stitch
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Post by stitch »

Hi again, Corrie, I was on neurontin for yrs and I was never like this. Don't know about the Lyrica yet.

Charlene, thanks for the info but so far no e-mail address. And I am sorry to say I am no better today, maybe worse after not sleeping because of nite mares from the wellbutrin.

I have been reading so much about everything my eyes are going :shock:. I did receive a prviate pm from Susan but don't know if I sent one back to her. I did send 2, hope I did them right, remember I am still new at the boards.

I read a letter from the person who founded the Southern California Support group, from way back and she had 3 back surgeries, she never said if they made her legs worse. I cried so much when reading her letter.

Thank all of you, each and everyone and I am calling the dr tomorrow because I can't keep on crying. Love you all, Jeannie

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