Re: Finding a good RLS Doc!

[Guest guest]

Lynne,

I took my mother to three Board Certified Neurologists when we were

desperately searching for help for my Mother's severe RLS symptoms. It was a

trip and a half. The first two had no idea what we were talking about and the

third one at least knew what it was but had a very poor understanding of how

to treat it.

We ended up with Dr. Elaty, the Medical Advisor for our local support group.

He practices Internal Medicine but I could care less if he was veterarian. He

has intensely studied RLS and never leaves any stone uncovered trying to help

his RLS patients.

Have you tried the RLS Foundation's support group list? If there is one near

you, they might know a physician who is knowledgeable and tries to help.

Once you find one of the golden jewels who for whatever reasons has become an

expert on RLS, most of the battle is over trying to find relief. It also

helps to be as conversant as possible with underlying causes and treatments

as you and the doctor should work hand and hand on it.

It feels so good to have stopped beating our heads against the wall with

doctors who know enough to shake in a thimble on RLS and/or who care less

about the horrible suffering that takes place and/or think it is all in your

head! I cannot tell you how many of our local support group members have been

referred to a psychiatrist. Maybe a few needed to go but not all of them!

Barbara

<<

Hi gang, So many RLS sufferers seem to think that a neurologist will

understand their problem better than their primary physician. And I'm sure

many do. But just thought I'd tell you of an incident today.

I went with my husband for an after-hospital visit to the neurologist who

had been called in to see him. When the visit was over, I asked the doctor

if he knew anything about RLS (thinking I might go see him if he was well

versed). He said yes, and I said I had it. He immediately said, " Sinemet

is the best medication for that. " I then said I'd tried it and it didn't

work. He then scribbled out on a Rx pad the names Klonopin, mirapex, and

sinemet and said they were the medications used for RLS. I said I belonged

to a e-mail RLS support group, and he cut me off, saying " A patient brought

me a whole lot of information about it. I read it and then threw it away. "

I asked him why he threw it away, and his comment was " It's mostly in their

head, but they all seem to think they need medication. Mostly it's an old

folks ailment. " Then he stood up to indicate the visit was over. So I guess

he thinks I'm a complaining old lady. :-) I didn't bother to tell him that

my RLS is under control with medication, but it took a little testing to

find the right combination.

Just thought you'd find such heartfelt compassion from a doctor very

moving!!! Glad he isn't my doctor!!! Evidently the poor RLS sufferer who

brought him all the information isn't going to get much help. My heart goes

out to that person. I had an irresistable urge to punch him in the face,

but I behaved like the (old?)lady I am and kept my mouth shut. :-)

Lynne Gessner

sdale, AZ

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