Re: Went Sleep Disorders Seminar for Docs; inside story!

[Guest guest]

I gave a 1/2 " high stack of papers printed from this and the internet sites

to my doctor and MADE him sit next to me and go through each page. He is

studying them he tells me, and at my appointment next month says he will be

better equipped to treat my RLS daytime symptoms that we have been unable to

treat so far. Nighttime RLS is under control with Sinemet, Vicoden,

Klonopin AM & PM, oxycontin... I also have chronic pain and a brain injury.

He looked hard at every one of those pages, I had to take control and I also

gave him a big list of addresses for sites. Try it yourself. Good for you

to talk to that doctor.

Nat Dean, Santa Fe, NM

----------

>From: SurSiliImp@...

>To: rlssupport (AT) onelist (DOT) com

>Subject: Went Sleep Disorders Seminar for Docs; inside story!

>Date: Sun, May 30, 1999, 9:12 PM

>

> From: SurSiliImp@...

>

> Jan,

>

> I have never heard of Dr. Swick in Houston. I am in Florida and being so far

> away, I am not up on the doctors good at treating RLS in Houston. Interesting

> stuff from Sleep Disorders Seminar for doctors I attended last week so keep

> reading!

>

> My E-mail address is tricky; please copy and paste it in your address book

> per below or use reply only:

>

> Sursiliimp@...

>

> This past week, the Medical Advisor for our Central Florida RLS Support Group

> for which I am the facilitator (next meeting in Orlando on 6-13-99), Dr.

> Elaty called me. There was a meeting being given for the doctors on Sleep

> Disorders and he was unable to attend. He asked if I would go having already

> obtained permission from the representative for the drug company sponsoring

> it for me to attend and take notes for him.

>

> The speaker was a Board Certified Psychiatrist/Neurologist who is certified

> by the American Board of Sleep Disorders Medicine. He was being paid to talk

> by Searle who was sponsoring it with the tactful pitch being on Ambien, one

> of their drugs.

>

> The doctor, billed as an " expert " on Sleep Disorders, had traveled an hour to

> give the talk attended by 30 other physicians and me. He covered Sleep Apnea,

> Narcolepsy, PLMS and " mentioned " Restless Legs Syndrome. On RLS he merely

> said it was a sleep disorder and said NOTHING ELSE about it much to my

> disappointment!

>

> After his talk, I introduced myself as the facilitator for the Central

> Florida RLS Support Group and asked him what the symptoms of it were. His

> reply to that, a stab, " a pulling or tugging in the legs. "

>

> I then explained that might also be not wanting to risk offending him but it

> was primarily a creepy, crawly feeling in the legs although it can spread

> elsewhere that many described as feeling like bugs or worms and it was worse

> at night while relaxing such as sitting or laying down to try to go to sleep.

> And it could be debilitating and VERY DISRUPTIVE TO a person's sleep.

>

> I handed him the booklet by the RLS Foundation and he said, " I didn't know

> there was any information available on it. " As he was flipping through the

> booklet, he looked at me in all sincerity and asked what the treatments were

> for RLS. As I ran through them, he followed my " talk " in the booklet from the

> RLS Foundation which also outlines the treatments. I also gave him a copy of

> the latest Medical Bulletin and a brochure giving the contact information for

> our support group and the dates of our meetings for 1999. This is like being

> a pioneer in the wild west 200 years ago!

>

> Dr. Elaty went a few months ago to a Sleep Disorders Seminar being given at

> Mayo Clinic in ville one weekend, a 2 1/2 hour drive each way for him.

> At the lecture on RLS, he said most of the doctors were half asleep. He tried

> a " wake up call " telling them this was a serious, often debilitating disorder

> and if they did not get more conversant with how to diagnose and treat those

> with it, they were going to lose patients to him or someone else who had

> taken the time and trouble. He said that did work to some extent as many

> started asking questions and paying better attention.

>

> I am spending the time to tell you this so you will realize even if it is a

> doctor who is a Neurologist, Psychiatrist/Neurologist or specialist in Sleep

> Disorders, why they might not know next to nothing about RLS. Also, what the

> doctor giving the lecture at the knew about PLMS you could shake in a

> thimble. Temporary insomnia because of work hour changes, a traumatic

> incident in one's life, etc. (treat it with Ambien!), Sleep Apnea and

> Narcolepsy, he sounded like he knew his stuff.

>

> There are doctors who starting to take an interest. It takes doing homework

> to become totally conversant in the treatments and anything that might help.

> They just don't have the time to be an expert in every single disease or

> disorder there is, tens of thousands, unless for some reason they choose to

> do so.

>

> This link will take you directly to the list of support groups at the RLS

> Foundation Site giving the name of the facilitator and how to contact him or

> her.

>

> http://www.rls.org/sg_loc.htm

>

> For those who are in an HMO and they are unable to find a good RLS doc who is

> a provider, an occasional office visit for which you might pay might be far

> less expensive them changing to another plan such as a PPO or plan where you

> can go to anyone you choose. You might find you can accomplish a lot more in

> life and find other ways to save that will more then recoup the costs because

> you are well rested! After the initial office visit, subsequent ones

> typically are $40 (less co-pay of $10 = $30). Go three times a year and you

> are talking perhaps a cost of $90.

>

> The RLS doc who you see, if you cannot find one good at it who is a provider,

> can give you a note to test for ferritin, B-12 an/or folic acid (they are

> like a union and 98% of the time; in our local support group, they order

> tests or you might say honor our Medical Advisor's notes) with the primary

> care physician ordering these tests and writing any suggested prescriptions

> (for those in an HMO: do you have to obtain the prescription from a provider

> or will they pay for it even if written by another doctor?). Two heads might

> be better then one. These are just some of my thoughts.

>

> Good RLS docs are starting to appear; again, the best way to find those are

> by consulting your local support group. If there is one available, they

> should have ferreted him or her out or persuaded one to take an interest.

>

> Barbara

>

> ------------------------------------------------------------------------

> Congratulations to " M-K-ROSES, " our latest ONElist of the Week.

> http://www.onelist.com

> Visit our homepage and share with us how ONElist is changing YOUR life!

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

> support purposes

> and is not intended to replace the examination, diagnosis and treatment of

> a licensed

> physician and no such claims are inferred.

>

[Guest guest]

In a message dated 6/3/99 8:16:30 PM !!!First Boot!!!, nat@...

writes:

<< He looked hard at every one of those pages, I had to take control and I

also

gave him a big list of addresses for sites. Try it yourself. Good for you

to talk to that doctor.

Nat >>

Sounds like you got yourself a decent doc, eh? We should all be so lucky.

RAINBOWPED@...

[Guest guest]

In a message dated 6/3/99 8:16:30 PM !!!First Boot!!!, nat@...

writes:

<< He looked hard at every one of those pages, I had to take control and I

also

gave him a big list of addresses for sites. Try it yourself. Good for you

to talk to that doctor.

Nat >>

Sounds like you got yourself a decent doc, eh? We should all be so lucky.

RAINBOWPED@...

[Guest guest]

In a message dated 6/3/99 8:16:30 PM !!!First Boot!!!, nat@...

writes:

<< He looked hard at every one of those pages, I had to take control and I

also

gave him a big list of addresses for sites. Try it yourself. Good for you

to talk to that doctor.

Nat >>

Sounds like you got yourself a decent doc, eh? We should all be so lucky.

RAINBOWPED@...