First time seeing a neurologist

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lhoff12085
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Location: Sarasota, FL

First time seeing a neurologist

Postby lhoff12085 » Fri Apr 24, 2015 8:37 pm

I was just diagnosed in Jan 2015 by a reumotologist (bc my primary couldn't figure it out.) He put me on ropinirole and it's taken away my leg spasms at night and for 2 months, the aching pain during the day. I just saw a neurologist for the aching pain. He told me that RLS didn't occur during the day and that my day pain is bc of the nightly spasms i.e. in his words "like over exercising". He interned at Georgetown and specializes in Limb Movements. Could he really be so inexperienced w RLS? He put me on the Neuro Patch for 2 weeks and then have a followup appt. He said if that doesn't work, he's sending me to a sleep study.

So I have a few questions for guidance:

1. I feel a sleep study is a waste of time given that my spasms have mostly gone away. My husband confirms that I don't jump around at night. Do you think there's anything to be gained?

2. Should I go through w the followup? I have the Clinical Management of RLS book and thought I could highlight areas that relate to my diagnosis, day pain, etc. I have no idea if he'll be receptive. And if he is, is it worth sticking w a doc who's uninformed?

I'd appreciate any advice anyone can give.

jul2873
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Re: First time seeing a neurologist

Postby jul2873 » Fri Apr 24, 2015 9:49 pm

I don't have any advice but I think his comment that the aching pain is the result of RLS during the night is true for me. If I have an especially bad flareup of symptoms, I do then get an aching pain in my leg (usually one or the other at a time). Extra kratom relieves it for me; I've never taken any of the dopamine drugs. I don't think he's right about symptoms only happening at night, however. If I try to sit around to read or work on my computer in the afternoon, I often get symptoms, and have to take a little kratom.

ViewsAskew
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Re: First time seeing a neurologist

Postby ViewsAskew » Fri Apr 24, 2015 10:13 pm

Anytime PLMs are involved, a sleep study is a good idea. That said, what's best is to have two, and that is crazy expensive - one without meds and one with. Then you really know.

I have never had any aching, so I can't speak to it at all. As bad as the WED and PLMs have been, I'm just plain tired, sluggish, etc, but I don't hurt anywhere.

In terms of the doc - he isn't correct in that WED/RLS cannot happen during the day. It definitely can. Aching pain is a toughie - there are SO many possibilities. Some people experience WED as an aching pain. Some people, as jul2873 said, find that they have pain from the excess movements. Pain can be from many other things - non related to WED or PLMs - too. So, I suppose the first thing is to try and distinguish it - are you sure it's not RLS/WED? If you think it is - movement helps it, for example - then I'd find a new doc. If you think it's NOT WED, even if he is misinformed about that, he might be informed enough to help with whatever it is.

Tough call.
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.

sleepdancer2
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Re: First time seeing a neurologist

Postby sleepdancer2 » Fri Apr 24, 2015 11:55 pm

Could it be the doctor was saying one doesn't have PLMs during the day? If he said RLS, I doubt that's what he intended to say. My periodic limb movements at night caused horrible muscle and joint pain during the day, and I think it was exactly what your doctor said - my muscles never got to rest and recover as they were contracting all night when they should have been resting. If you are concerned about this doc's ability to treat a patient with RLS/WED, maybe you could send a message to his office and clarify the statement in question. It may have been miscommunication. If they repeat that RLS is not in the daytime, then yes, I'd be concerned. But to be honest, if you have periodic limb movements I'd think having a specialist in that would be valuable. I wouldn't be too hasty to jump ship. If there is suspicion that nighttime movements are causing your daytime pain, it wouldn't be a bad idea to get a sleep study to see exactly what you are dealing with. Maybe they are not as pronounced but still present.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: First time seeing a neurologist

Postby ViewsAskew » Sat Apr 25, 2015 3:19 am

Even if he said PLMs can't happen in the day, he'd be wrong. According to Clinical Mgmt of RLS, PLMs can be:

PLMS - during sleep
PLMW - during wakefulness

sleepdancer2 said something about not being too hasty - I'd add that another reason not to be hasty is that so few doctors understand any of it, let alone all of it. I literally fly to So California from Illinois to see a doctor who gets it all. I can't find one here who even gets part of it. So, to switch, you'd have to first know that you were switching to someone who was better. In the ten to 12 years I've been seeing doctors, I've switched multiple times. And it never was what I hoped it would be until I started seeing Dr Buchfuhrer. Not saying it's impossible to find someone local - many people here have docs they really like who are local. But, not all of us have that - if you tell us your general area, we might be able to help. You do not need to tell us more than the general area - northern Illinois or Baltimore area, for example.
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.

Rustsmith
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Re: First time seeing a neurologist

Postby Rustsmith » Sat Apr 25, 2015 11:41 am

There are a couple of questions about the neurologist that you need to answer to your own satisfaction before you decide to move on to another doctor. Most of our members went through several physicians of different specialties until we found the right doctor who gets it.

1. If he/she is not currently up to speed on WED, is he/she willing to work with you to learn? Ir the doctor is willing to work with you to expand his/her knowledge, then you definitely have a keeper. On the other hand, if you get the "I'm the doctor" attitude, get out of there quick.
2. Take a look at what you other options there are for doctors are in the area. Rather than searching for a "generic" neurologist, you might try to find one who specializes in movement disorders. You will have a much better chance that one of these specialized neurologists is up to speed with the current thinking. A sleep neurologist would also have a better chance of being familiar with WED.
3. Talk again with your GP to see if he/she is willing to learn about WED. I am fortunate to be able to see one of the WED experts, but my GP is also interested in learning about my treatments for his own education. At my last appointment, I told him about the RLS-WED name change and he laughed with his reply "I guess I didn't get that memo" and he rapidly wrote a note to himself (which I assumed was to look into this further).
4. If you do not already have a copy, purchase and read "Clinical Management of Restless Legs Syndrome", 2nd edition. Some of our members even buy a copy for their doctor and highlight key areas. It is available from Amazon.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

lhoff12085
Posts: 33
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: First time seeing a neurologist

Postby lhoff12085 » Sat Apr 25, 2015 8:48 pm

Thank you all for your thoughtful replies. I need to think about what you've said and prepare for my followup on May 18th which it sounds like is a good idea. I will use the Clinical Management book as a basis for discussion. BTW, I live in Sarasota FL. I will write something on the intro page for newly registered members. Laura

sleepdancer2
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Re: First time seeing a neurologist

Postby sleepdancer2 » Mon Apr 27, 2015 8:50 am

ViewsAskew, thanks for adding that about PLMW. Been so long since I was augmenting and had daytime movements that I forgot they can be diagnosed even without augmentation - I think. Is that correct?
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

pinkynose
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Re: First time seeing a neurologist

Postby pinkynose » Wed Apr 29, 2015 4:50 pm

Hi. I am very new to this but I can tell you I have the same RLS symptoms during the day (especially when sitting) as I do at night. I often feel like I have over exercised one or both legs in the morning when I wake up. They seem to be tired. Sounds weird but it's how they feel.

Rustsmith
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Re: First time seeing a neurologist

Postby Rustsmith » Wed Apr 29, 2015 5:10 pm

lhoff12085, if you find that you can work with your neurologist, PLEASE do let us know the name of the doctor. ViewsAskew and I were talking over the weekend about how Florida is one region of the country where we have not had any of our members recommend a doctor who is willing to work with patients to treat their RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Re: First time seeing a neurologist

Postby badnights » Thu Apr 30, 2015 7:37 am

Moderator Note: This topic has been moved from the Physical Treatments forum to General WED/RLS to better match its location to its content. A shadow topic has been left in the original location to help others find it again.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: First time seeing a neurologist

Postby ViewsAskew » Thu Apr 30, 2015 6:03 pm

sleepdancer2 wrote:ViewsAskew, thanks for adding that about PLMW. Been so long since I was augmenting and had daytime movements that I forgot they can be diagnosed even without augmentation - I think. Is that correct?


Yes - you can have PLMW without augmentation. I don't know how often it happens, but I have mild PLMW and am not augmented at this time.
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.

Norm
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Joined: Fri Jul 24, 2015 11:47 am

Re: First time seeing a neurologist

Postby Norm » Sun Jul 26, 2015 12:54 pm

Like you, I frequently get pain in specific places in my legs during the day or night from my WED. The reason I am convinced it is from WED is because the location of the pain corresponds exactly to the same location of my WED trigger nerves that flare up when I lay in bed. When they are bothersome during the day, I treat them the same as I do the WED. You are lucky you can take the medication without reactions. Medication is the easiest method of control. I have tried almost everything else available since I cannot tolerate the medication.

Regarding your other question, I would follow through with your Neurologist's sleep study if it affordable for you. If not affordable, tell your Neurologist this. You want him to understand your situation so he can offer the best care. If your Neurologist is in charge of his/her own sleep clinic, you can be fairly sure he or she is an expert in WED symptoms. You must also remember that a typical Neurologist does not have WED and therefore they have not felt the same sensations as you. There is much unknown about WED. WED sensations vary widely.

Learn all you can about your WED, and try to understand it. The more you understand it the better you can deal with it. Also, take the minimum level of medication necessary for complete relief just as a precaution of any medications becoming a problem for you.


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