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Re: Clonazepam for Sleep

Posted: Sun Jun 12, 2016 9:12 pm
by Polar Bear
Above recent posts by ViewsAskew and badnights - superb !!

Following on from Holland's comment - my GP told he he recalls a one hour lecture during is medical training.

Re: Clonazepam for Sleep

Posted: Tue Jun 14, 2016 8:02 am
by ViewsAskew
Holland, at one time I really did consider suing my neuro. When I write out how much I went through at the time, it is truly remarkable - and not the good kind of remarkable! I talked my husband out of suing, thinking about how difficult it would be and how much I'd suffer. Sometimes I wish I'd have done it.

Re: Clonazepam for Sleep

Posted: Tue Jun 14, 2016 10:19 am
by badnights
It's sad that suing might be necessary.

I'm a retired doctor and even though I have RLS, I received no training about RLS while I was in my training and even though I did yearly continuing education studies I don't remember any of it having to do with RLS. Because RLS was not on my radar, I probably missed many cases.


It's so true, and very sad, that sleep in general and RLS/WED in particular is not brought to the attention of medical students. I'm impressed by how most doctors learn on the job, though. Do you ever wonder about the ripple effect we're all having, just by being WED/RLS patients?

My first GP knew something of RLS/WED - she mentioned the name to me before I mentioned it to her, I think, and suggested I take iron. Also sent me to an internist, and referred me to a sleep clinic. I don't know how she had first heard of it, though.

The internist poo-poohed the iron and told me to stop. He knew a bit about WED because he had a personal interest in sleep-related breathing disorders, so he advised me to take ropinirole. He told me later that he figured I would walk away happy forever, he really thought it was that simple. He didn't know about iron or about augmentation. To his credit, he learned more eagerly and better than any doctor I've had since.

Then I had a GP who was very new, scared by it all, and passed me off to a different GP as soon as she could. But she too learned, and even told me one day that she had diagnosed a case because of me.

I had to visit a GP temporarily who told me RLS couldn't happen in the arms or in the daytime. She spoke emphatically and stridently, but I was confident enough by then to correct her with confidence. Hopefully she learned something that day. Another guy I had to see only once, for a refill - I remarked that no one wanted to know how it felt, and he sat back, very relaxed in the midst of his busy schedule that they had fit me into, and asked me "what does it feel like". I was taken aback for a second, but rose to the task. And he listened, really listened, and asked questions, as if he had all the time in the world.

Then I had a GP (whom I still have now) who at first thought that opioids just made WED patients too groggy to be bothered by their symptoms, but she happily absorbs information and now knows that opioids treat the symptoms of the disease (and make me alert not groggy) and many other things too. I am fairly certain she has recognized refractory cases better due to her experiences with me.

My neurologist caused me great grief before turning me over to a sleep specialist. But at least he recognized his mistake and found me better care. The sleep specialist is an angel (though I don't see him often).

Almost every doctor I've seen, the good the bad and the indifferent, has learned something about RLS/WED from me, and most of them have done so willingly - I never had to force information or get argumentative. I suspect these doctors learn from most of their patients. The impact of this type of learning has to important.

Suing would probably be more effective though :(

Re: Clonazepam for Sleep

Posted: Tue Jun 14, 2016 9:36 pm
by Yankiwi
debbluebird wrote:I believe that most people, and doctors believe that RLS is a minor thing, almost nonexistent. Unless you have it, you don't get it.

I agree. You get the idea if you live with someone who has it. Luckily, my doctors (mostly young) take me at my word and try to help. If a doctor has multiple patients with RLS he or she would be more aware of how it affects those who have it.