Neurologist or 'Sleep Specialist'?

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pedrime
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Neurologist or 'Sleep Specialist'?

Post by pedrime »

Hi Everyone-

I think I might see someone in the New Year if I can't maintain some lasting relief off meds. Just when I think I'm OK for awhile it comes raging back.

My family dr is pretty clueless so I think I'll try to find a specialist on my own. From your experience which of these docs is a better choice? Where I live most 'sleep specialists' are pulmonologists. Thanks!

Meg

Polar Bear
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Post by Polar Bear »

I've found the most important thing is a doctor who listens, regardless of type of doc. My GP admits he knows little about rls, but will pay attention to the Mayo Algorithm when I take it with me, and he follows their advice regarding medications.

Betty

becat
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Post by becat »

Hi and welcome Pedrime,

I think Betty said it best. A doc that works with you will be the winner in the long run.

I do happen to see a sleep doc, but he is also an expert in this community. I got so lucky.

Be aware that any doc that you see might want to run certain test to rule out other problems. It's no fun, but it's a good idea.

Do get a copy of the Algorithum, it is the guide to diagnosis and treatments. It's a must for any doc you decide on (if they are not educated in RLS) and for yourself.

There are no real test other than a ferritin level check, the iron we use in our brains. You would have to ask for that blood work to be done, as it is not apart of a normal blood panel. The experts like to see your ferritn around 50mcg/L. Mine is around 8, so you can see the importance of knowing.

That test and simple conversation about your medical history and even your family history is the way to a diagnosis. For ex: Did you or anyone in your family suffer with growing pains as a child?

I'm sure others will pop in and welcome you and give thier thoughts as well.

Welcome again and read everything, we learn best from each other.

Lynne

ViewsAskew
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Post by ViewsAskew »

Lynne got really lucky with her sleep doc. Betty with her GP. It took me a bunch of docs before I got lucky...a GP. I tried a neuro who specializes in this....horrid. And a sleep doc...very nice, but just didn't get it. And another neuro...worse than the first. Etc.

Yep - one who will listen to you, treat you with dignity, who won't be freaked when you show up with some new information. One who "gets" this disease from it's physical symptoms to treatment to how hard it can affect your life. He or she will be a keeper.
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.

Polar Bear
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Post by Polar Bear »

Yup... the important bit is that doc is a listener, and if he doesn't know anything about rls, (and even if he thinks that he does) that he follows dr B's advice on the algorithm. :wink:

KBear
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Location: Wisconsin USA

Post by KBear »

Meg- Since your RLS seems to come and go, you may want to chart your symptoms for a few months to see if there is a pattern.

When I started charting my symptoms I noticed a definate correlation with my menstral cycle with my RLS symptoms always appearing a week to 10 days prior to my period. Yours may follow a different pattern or you may discover that it flares up when you eat certain foods.
Last edited by KBear on Thu Dec 20, 2007 7:05 pm, edited 1 time in total.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

Aiken
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Post by Aiken »

I personally have had two sleep specialists I've liked, and three neurologists that I thought were ignorant, blow-me-off or shrug-at-me, act-all-superior, jerks.

I'll reiterate what my sleep specialist postulated when I asked him if he knew why people often have bad luck with neurologists: Neurologists often have to deal with people faking things like fibromyalgia to get disability, and end up getting jaded and disinterested, while sleep specialists usually deal with people who simply want to sleep better. Thus, at least in some contexts, you may have better chance of getting a wary or even grumpy doubter when you go to a neurologist.

On the other hand, a well-educated and non-jaded neurologist may know more than someone who specializes in sleep medicine and who has only mainly dealt with pure sleep disorders in the past, vs. neurological discomfort disorders like RLS and PLMD.

Me, I'm lucky my sleep guy seems to be the best of both worlds, and he's pretty sharp and interested as well.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

SquirmingSusan
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Post by SquirmingSusan »

I haven't found a sleep specialist yet that I like. The first one wasn't bad, but after the sleep study he turned me over to his nurse practitioner, and she was horrible. I was having killer augmentation the day I went in to see her, and all she wanted to talk about was getting my sleep apnea treated. Well, it turns out that my sleep study showed negligible apnea, and that was confirmed by the next sleep doc, a neurologist. Dr. #1 really didn't have a clue how to treat severe augmentation, and the office didn't have anyone on call for emergencies, either. And when I started to take Vicodin for the augmentation, they treated me like a junkie and called them in about a weeks worth at a time.

Dr. #2, the neuro, supposed one of the big cahunas in sleep medicine around here seemed pretty much stumped by the severity of my RLS and circadian rhythm disorder. He told me to take melatonin 5 hours before I want to go to sleep. OK, that helps a bit, but a $500 initial appointment for that???

I don't know - it seems like pulmonologists (most of the sleep doctors) always want to give you a CPAP machine, whether you have apnea or not.

I'm saving my pennies to go see Dr. B in California at this point. I don't even want to try Mayo. They were horrible when we lived in Rochester and just don't even want to try.

Yup - find a doctor who listens! And is willing to learn, and from you, the patient! One doctor wouldn't listen to me at all and gave me the "I'm the doctor, you're the patient" speech.

Oh geez. I hope you'll have better luck than I've had with doctors. :roll:
Susan

Aiken
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Post by Aiken »

SquirmingSusan wrote:One doctor wouldn't listen to me at all and gave me the "I'm the doctor, you're the patient" speech.

It was probably time to give him the "Not any more," speech. :)
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

dogeyed
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Post by dogeyed »

I would say to call: A family practice with several doctors, or a young neurologist, possibly a rheumatologist, or you can phone a nearby larger town, until you find a doctor group that knows what RLS is. You can ask, "I have Restless Legs Syndrome, is there a physician there who can treat me?"

This is another link to a government website, you can print it out, it details what RLS is and how to treat it:

http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

pedrime
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Post by pedrime »

Thank you everyone for your comments. I've had similar experiences to yours..esp re. the apnea, which I do not have.

Actually I am seeing a Dr. Benjamin Walter, neurologist, who is supposed to be an RLS expert. We shall see.

I'm with you Susan...should start saving to see Dr. B!

ViewsAskew
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Post by ViewsAskew »

Dr Walter is an RLS specialist...but I know nothing about his ability to communicate or handle people on a personal level. I'd love to hear how the visit goes. That's one thing I'd really like to hear and see more of on this forum - personal experiences with doc, including doctor's names. Sure, everything is relative and a person I might love someone else might not, but hearing objective evals could only help others. Of course, JMHO.
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.

pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

Post by pedrime »

I'll be sure to let you know all about the visit. I am counting the days, my RLS has been so bad lately; if he's condescending/poor communicator, I'll be despairing.

I'm a pretty assertive gal, so I will ask him what/why he's charging me for the visit if I feel it was a waste of time. I don't care how many letters he has behind his name, I'm a paying client.

I have baby twins & a preschooler so it's hard for me to find sitters & get to appts. I am really counting on this guy!!!

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