Went Sleep Disorders Seminar for Docs; inside story!

[Guest guest]

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