Neurologist

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Wayne
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Location: Virginia (USA)

Neurologist

Post by Wayne »

Anyone have any experiences with RLS and Neurologists?

Went to see my GP two weeks ago to discuss new treatment options and showed him the Mayo algorithm. He was quite interested, took the time to read it and asked if he could keep it. He was not willing to prescribe any of the opiates himself when I wasn't having sever or chronic pain, but he did prescribe me Darvacet (generic) to try, which I declined, I've had it before for pain, while it helped with the pain it did nothing for my RLS. Since we have already gone through the standard treatments of Requip and then Mirapex. He recommended and referred me to a Neurologist.

So my appt with Neuro was last week. I was encouraged when I went to the exam room and saw informational posters about RLS and Requip (at least they've know what it is) The neuro has ordered some bloodwork, an MRI on my head, some kind of nerve test and...a sleep study, before we decide on a treatment. Will return in about a month to discuss treatment options.

Had a long discussion with him after the exam, he is familiar with RLS, has and is treating current RLS patients. So I feel good about this. Will be back to see him in about a month after I get all the tests done.

What is a sleep study like? Shoot, I could think he could've just asked my GF, who several times has had to go to another room because I keep her awake.

Polar Bear
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Post by Polar Bear »

Hi Wayne, Welcome to this great site.

Someone will probably correct me on this, or clarify, but I didn't think a test or sleep study was needed for a diagnosis of rls.

When I went to see a neurologist (UK) referred by my GP. I paid privately, said my difficulties were rls, he said he'd decide if it was rls, half an hour later, yeah - you've got rls.!! He looked at the Mayo Algorithm and said it was a good guide to follow (and that my GP and I would do fine with it, that he didn't have a lot of experience of rls, and no point in seeing me again.

I could have saved a lot of money, but at least his 'diagnosis' reassured my GP with regard to the prescribing of medications he may have had a doubt about.

Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
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Post by Polar Bear »

Sorry Wayne, I don't know what made me think it was your first post. I read everything far too quickly !! Sorry....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jumpy
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Post by jumpy »

Somewhere on this site is a description of my experience with a "sleep clinic". I had a very bad spell of insomnia. The sleep clinic was supposed to help. It was horrible. They hook you up to all sorts of wires, glued to you head an various parts of your body. They gave me two Ambian, cut out the lights and expected me to sleep. Of course I didn't sleep. The next morning they told me they couldn't help me because I didn't go to sleep...Duh!

I'm no doctor, but I have been through a lot. MY personal opinion is the sleep clinic is not necessary to diagnose RLS. Maybe sleep apnea (that seemed to be all they were interested in.)

I think I would have another talk with your dr before wasting your money.

Good luck, Pat

Wayne
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Location: Virginia (USA)

Post by Wayne »

According to the info he gave me on the "sleep clinic", it's just one night, with the electrodes and monitors and I leave in the morning. I can bring my computer (no internet connection though) or a movie or whatever to amuse myself. I'm not on Requip or any other RLS specific medication right now. I take a .5 Xanax at bedtime to get me past the creepy crawlies and into sleep. Think they will let me take the Xanax at the clinic instead of the Ambien?

He did mention Apnea, which I doubt I have, my GF has told me I don't have the snoring/gagging fits while I sleep, although I do snore (so does she, but don't tell her I said that). Besides, does apnea cause the "creepy crawlies" in my legs in the evenings when I'm awake? Don't think so, but hey, while I'm there go ahead and check.

I'll post my progress back when all the tests and such are complete. Have to put the tests off for a week for now, because I'm going to be traveling on vacation. I've lived this long with the xanax at bedtime, I'll make it another few weeks.

Neco
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Post by Neco »

Sleep studies are most definitely not required to diagnose RLS. But, I suppose it can give you additional documentation to prove the point of RLS if the clinic complains in your results sheet that you would not go to sleep.

SquirmingSusan
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Post by SquirmingSusan »

I've always heard that a sleep study is not necessary to diagnose RLS, since it's an "awake" disorder. It is diagnosed by the doctor taking your history and listening to you describe your symptoms. But there is a lot that the doctors can find out from the sleep study, and they certainly are interesting. Mine showed rather conclusively that I have PLMD, as well as delayed sleep phase. You don't think that you'll ever sleep with all those wires attached to you, but it's so boring that you'll find that you will sleep some.

The biggest problem with those studies is that the doctors really like to use the results to give out CPAP machines, whether you need them or not. :roll:
Susan

mackjergens
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Post by mackjergens »

For some odd reason most Drs toss plmd (periodic limb movement disorder with rls.

When you have RLS you do NOT sleep, that is why we are called "Night Walkers" because we end up walking the floor all night due to the creepy crawlies in legs. The RLS Foundation actually has a quarterly magazine that is named 'The Night Walkers" Its a very good thing to subscribe to as it will keep you updated on all the new research and info of RLS. You will find that info on www.rls.org

PLMD(Periodic limb movement disorder) is found during a sleep study, because it happens while you sleep. PLMD is when your legs, jump and move while you are sleeping.

I am pretty sure this info is found on the www.rls.org web site. But its really a waste of money to have a sleep study done for rls, IF you have rls you already know it, because it will keep you awake and moving all night.

Aiken
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Post by Aiken »

mack--

While I agree that it's annoying how many doctors equate PLMS and RLS, I do think a sleep study is probably worth doing, assuming it's not a financial hardship to do it.

For instance, if you have both RLS and some form of regular insomnia, the two will get all synergistic and you'll really be screwed. Finding out that I have Delayed Sleep Phase has been useful to me, even when I'm focusing on treating my RLS.

Also, PLMS might really be present as well, which is a good thing to know. A big movement would obviously wake the bedmate, so maybe that's not an issue, but things like dorsiflexion might be subtle enough to go unnoticed, while still interfering with sleep.

Me, I'd go ahead and do the study, but with the knowledge that the study won't diagnose RLS itself. Well, not unless pacing around the lab all night makes it obvious. :)
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.

ViewsAskew
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Post by ViewsAskew »

Well said, Aiken. The study was helpful to me, too, even though it didn't "diagnose" RLS.
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.

mackjergens
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Post by mackjergens »

Yes having a sleep study can find other things,but if a Dr tells me he is just doing the sleep study for rls, I personally would not have one.

Another thing if I were going to have a sleep study done, I would not take any med, because IMHO taking a med would not give you a true picture of what ALL is going on during your sleep. Again that is just my opinion.

Now if they thought I had other sleep problems, and wanted to ck for those things then yes I would go ahead and take my rls meds, because if I didnt there would be no way I could stay in bed and hooked up to wires. Without my rls meds, I end up walking all night.

I do realize that each person is different. I just never have understood how someone with rls could actually have a sleep study done. Only because I know with my rls, I dont sleep at home so know I certainly would not be able to sleep in hospital.

Most times I have been in hospital for other things, before I had rls med, I would always end up walking the halls in hospital all night, certainly remember the strange looks I always got when a nurse would ask why I was up walking and when I explained about the creepy crawlies in legs. YOu could tell they thought I was a tad touched.*L*
hopefully those days of questioning rls legs are gone or at least better than in the past when no one knew what you were talking about.

Wayne
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Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Thanks for all the info. The MRI and blood work, OK, but a sleep study just seemed unnecessary. I already know I'm not sleeping because my legs are crawling all night.

I guess if having a medical technician "officially" observe that I'm not sleeping or sleeping restlessly accompanied with EKG and heart-rate readings will satisfy my doctor, I'll do it. And if the study turns up something else, we can deal with that also.

Hopefully at the end of all this, I will get a treatment/med that gives me actual symptom relief. The Xanax lets me sleep OK, so I can cope, but I mostly just endure the symptoms. I don't have 24/7 symtpoms like others, my RLS starts late afternoon (5pm, coincidentally about the time I get home from work. Connection??), with symptoms lately getting worse, but still at the same time of day.

I've made the appointments for the MRI and blood work at the end of next week, then I'll contact the Neuro about the sleep study.

Thanks again. I will update again in 3-4 weeks when finished.

Wayne
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Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Update: Today I had my nerve induction test (I think that's what it was called). It was uncomfortable, you might even say "shocking", but mildly so.

Nodes were put on my legs and various electrical shocks were administrated at various points on my legs to measure the response speed. It was all normal except for one measurement which he said was low (1 point less than normal).

The test was not done by the neurologist so he couldn't make any conclusions. I will see the neuro again in a few weeks, when the results of the blood work and MRI (done last weekend) get back to their office.

This concludes the testing except for the sleep study, and I've gone back to undecided about that one.

Interesting side note: At this moment, I'm not as RLS'y as usual for this time of the evening. Maybe the electrical shocks knocked some of the creepy crawlies out, but I would not recommend that as a treatment or trying it at home.

I hope it's all worth it in the end.

ViewsAskew
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Post by ViewsAskew »

You're too funny, Wayne. Thanks for the giggle.
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.

djohnso55
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Joined: Sun Jan 11, 2009 10:44 pm

Sleep study

Post by djohnso55 »

I have had two sleep studies. The first one my family dr. did to see if I had rls. He put me on requip. I took it for a while and did not like the way it made me feel. Anyway he sent me to a neurologist who is a sleep specialist.
And family dr. said to take klonopin untill I saw the sleep dr.
Sleep dr. looked at the first sleep study and said that everytime I moved my legs I snored, so he had me do anotehr sleep study with CPAP. I did not have sleep apnea, just mile snoring. Then he order CPAP about two weeks ago. It has been terrible trying to find a mask that fits. I saw the sleep dr. for a follow up and he is taking my off konopin and putting me on mirapex. I have had the worst sleep ever. I have always had problems sleeping. He also said that if you have the leg movements while you sleep it is then called PLMM and RLS if you have them while awake. I did have some leg movements during the evening before I went to sleep, but not like I read about on this forum. I am now wondering if I really have RLS or just PLMM.
I so sleep deprived that my judgement is bad during the day. I did have low ferritin level which I learned people with RLS have. THat led to an edoscopy that revealed I have celiacs disease, so now am having to be on a gluten free diet.
This all started last september when I went to the dr. with complaint of fatigue and mentioned that my legs jump in the evenings.
Sleepy!!

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