Must I have a sleep study done?

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SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Must I have a sleep study done?

Post by SleepyBhamster »

I haven't been here on the board since Injectafer infusions last Sept/Oct completely cleared up my RLS. I saw Dr. Rye in Atlanta, GA later in October--had arranged the appointment before getting the infusions (ordered by my rheumatologist after he read an email from Dr. Buchfuhrer with advice). Dr. Rye didn't seem keen on iron as being the best treatment for RLS and was a bit scornful of the Johns Hopkins docs getting all the limelight. He was quite insistent that I needed a sleep study in order to do anything with me in the future--once the infusions wear off. I think he wanted one in Nov or Dec, but I was able to convince him to put it off until April of this year.

So I have an appointment to see Dr. Rye in April but have not yet set a date for the sleep study. I don't sleep that well--mainly from anxiety now and osteoarthritis in my knees--but I don't see that a sleep study is going to make any difference as far as RLS treatment. I don't want to spend the time or the money on it--esp. since he will want it in Atlanta which means my husband would have to get a hotel room while I'm doing the study. I can't sleep with ANYTHING on me like a sleep tracker or even my wedding ring, so I can't see how it's possible they could get me to sleep with all kinds of wires on me. I've read a lot of bad stuff on sleep studies: that they rarely are successful and often require a second try--but are quite a lucrative business.

In the meantime, I read something in the last NightWalkers where Dr. Arthur Walters at Vanderbilt in Nashville, TN says he sees patients from AL, KY, and MS remotely. (I'm in the Birmingham, AL area.) I am wondering if I should see if he might agree to see me and whether he might be less irascible than Dr. Rye (he kept acting like I was taking all his time, constantly counting down how much time he had left--but then wasted it by telling me about studies he was involved in that meant nothing to me). And also if perhaps he might be less insistent on a sleep study. I mean, if the Injectafer infusions helped and may continue to help, then why insist on a sleep study?

Sorry to be rambling. I AM suffering from anxiety right now and am trying to work on it. Things like this upcoming appointment and a possible sleep study are one of the many things I keep ruminating about.

Thanks for your help!

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Must I have a sleep study done?

Post by SleepyBhamster »

Follow-up: I decided to see how I would even go about requesting an appt with Dr. Walters. Not sure, but it seems that I would probably have to see him in person for the initial visit. And I may need a referral from a doc. (Should I ask Dr. Rye? :P ) But after registering with the Vanderbilt patient portal, I was at least able to fill out a form saying I would like to see Dr. Walters about RLS. Will see what happens.

BTW: even though Atlanta is one hour closer to us than Nashville (2hrs versus 3hrs), the traffic in Atlanta is so awful that a drive to Nashville is actually less stressful.

debbluebird
Posts: 2210
Joined: Mon May 21, 2012 3:27 pm

Re: Must I have a sleep study done?

Post by debbluebird »

Just tell the Doctor you can't do a sleep study away from home. Say financial hardship as well as that you don't sleep well, including you can't have anything on you. Just refuse. Besides they can do a partial study from home.
Good luck.

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Must I have a sleep study done?

Post by SleepyBhamster »

Thanks, debbluebird--with my poor eyesight I thought it was dedbluebird and was rather shocked. :shock: :lol:

I haven't been good at standing up to doctors but will definitely give it a try! Appreciate the advice.

No word from Dr. Walters office. Will try again.

yawny
Posts: 263
Joined: Sun Nov 08, 2015 4:20 pm

Re: Must I have a sleep study done?

Post by yawny »

SleepyBhamster, I have chronic anxiety and when I was told I had to have a sleep study I couldn’t stop ruminating about it either. It’s one of the most unnatural procedures I’ve ever encountered. And the report told my doctor exactly what I had been telling my doctor. I would like to think doctors believe the patient but we all have encountered the opposite. I still can’t get over my doctor asking me if I drink alcohol and after telling him “never,” the look he gave me and then him asking me again.

I’m wondering if you could email Dr. Buchfuhrer again with the question you posted here and see if you can get his confirmation that a sleep study is unnecessary? That written confirmation could help you in this, no matter who you end up seeing. (P.S. you have a great sense of humor)

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Must I have a sleep study done?

Post by SleepyBhamster »

So sorry, debbluebird, that I forgot all about this thread. I emailed Dr. Rye's office to tell him I really didn't want a study and yes, I did cite financial hardship among other things. Long story short, even though I kept inquiring over the next 3 weeks, the doctor never replied even though his staff kept saying he would get back to me. So I cancelled.

I also cancelled the zoom appt with Dr. Walters. Guess I will wait until RLS becomes a problem again.

Appreciate your help!

Sleepy

Polar Bear
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Location: N. Ireland

Re: Must I have a sleep study done?

Post by Polar Bear »

I'm sorry that your appointment with Dr Rye and your attempted follow up communication was so disappointing. I do understand why you have for the moment cancelled your zoom appointment with Dr Walters. It can often be difficult to talk adequately about how awful your rls symptoms are when you are actually, at present, managing very well. I feel that when our rls symptoms are strongly active and problematic we can talk with much more fervour and express our feelings more strongly.
Please do keep us updated on your progress.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
Posts: 2210
Joined: Mon May 21, 2012 3:27 pm

Re: Must I have a sleep study done?

Post by debbluebird »

SleepyBhamster wrote:
Sun Apr 11, 2021 1:56 pm
So sorry, debbluebird, that I forgot all about this thread. I emailed Dr. Rye's office to tell him I really didn't want a study and yes, I did cite financial hardship among other things. Long story short, even though I kept inquiring over the next 3 weeks, the doctor never replied even though his staff kept saying he would get back to me. So I cancelled.

I also cancelled the zoom appt with Dr. Walters. Guess I will wait until RLS becomes a problem again.

Appreciate your help!

Sleepy
It looks like you handled it and the Doctor. When Doctors don't listen, change Doctors. I just changed my primary Doctor.
You might try to continue to find someone you like and who will listen. Good luck.♥️

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Must I have a sleep study done?

Post by SleepyBhamster »

Yawny: I missed that suggestion you made about contacting Dr. Buchfuhrer, but that's a good idea to ask him if he himself would insist on a sleep study. Thanks!

Polar Bear/Betty: good insight about how having active RLS makes it so much easier to talk about the problems. With quite a collection of health issues, I DO tend to forget how bad things can get when they are not currently happening.

ViewsAskew
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Location: Los Angeles

Re: Must I have a sleep study done?

Post by ViewsAskew »

SleepyBhamster wrote:
Mon Apr 12, 2021 1:49 pm
Yawny: I missed that suggestion you made about contacting Dr. Buchfuhrer, but that's a good idea to ask him if he himself would insist on a sleep study. Thanks!

Polar Bear/Betty: good insight about how having active RLS makes it so much easier to talk about the problems. With quite a collection of health issues, I DO tend to forget how bad things can get when they are not currently happening.
He does NOT require one. I see him all the time - he's never asked for one. If PLMS were the problem, he might want one to assess the degree, but not for RLS/WED.
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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