What to Expect? My 1st Consult w/Neurologist

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

What to Expect? My 1st Consult w/Neurologist

Post by LadyFox »

Hi everyone. I have an appointment with a neurologist in a couple of weeks, it's my first appointment to specifically discuss the RLS problem with a doctor. I've certainly mentioned it to my G.P. and my orthopedist but neither of them had much to say, other than suggesting a neurologist.

Interestingly, last night I was reading "The Sleep Thief" and what do you know? My new doctor is one of the people who contributed to the book! Dr. Walters in NJ. So, at least I feel I'll be in expert hands now.

I've been to this type of doctor before, but only for migraines and that ws pretty straightforward. I'm curious what people's experiences here were and would like to know what to expect. I assume he'll be taking a complete history for one thing.

My situation is minor in comparison to what I've been reading here - most likely I don't need to be medicated daily, but need something only as needed since my symptoms are not a nightly occurance, tho sometimes it does go in cycles and does become nightly.

Thanks!
Laurie

ViewsAskew
Moderator
Posts: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi Laurie,

Great luck! I'd give my eye-teeth to have a neuro like that, and I live in a large, major city - just not happening. I think you're probably safe just going in and telling him what you need. He'll probably ask lots of questions to ensure it is RLS, many neuros aren't used to people knowing what it is. You could look at the Mayo CLinic algorithm to see what they would recommend and if he does something different, you could ask him why.

Most important is to find out why he's making the choices he's making. What the chances are for augmentation or other problems, a realistic list of side effects. They often just give you the meds, pat you on the head, send you home and you don't know anything! If I'd asked more questions and questioned my first docs recommendations more thoroughly, I might be in a different place with RLS today.

I strongly believe that if your quality of life is compromised from RLS you should medicate. I also strongly believe that if you can avoid medicating, do so as long as you can. Tough, fine line. The drugs we take affect the CNS and cause many, many side effects, some of which we might not even know about. If you haven't read this thread, please do.

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=994

Let us know how it turns out.

Ann

Joy S

neurologist

Post by Joy S »

Hi Ladyfox,

Where is this Dr. Walters located? I am in NJ also and new to this site... just went to my GP the other day and she suggested I could see a neurologist if I wanted. I was not going to bother, since it seems you get no answers, but if this Dr. is right here in Jersey, maybe I'd give it a try. Like you, my RLS is cyclical. Sometimes it doesn't bother me, while other times it gets to be every night :evil: .

Good luck with your appointment...let us know how you make out!! :lol:

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Joy, Dr. Walters is in Edison, NJ. I found him while doing research online and was happily surprised to see he was one of the contributors to the book I mentioned. His list of credentials is long and outstanding. I just hope his personality isn't cut and dry. We'll see! Where are you located? Is Edison in realistic travel distance for you? I was lucky that it is only a few miles from my home. I certainly didn't expect to find a neurologist that was so specialized nearby. He actually specializes in sleep disorders in general, but since RLS is one of those, aside from being neurological, he has really gone into the field full force.

Let me know if you need any more info. Good luck to you too. I'll be posting once the appointment takes place, which isn't until August. He had no appointments for new patients prior and, only sees new ones in the middle of the afternoon. The women who made the appointment for me sounded sorry that she couldn't accommodate me earlier, but I told her, I've been living with this on and off for years, another month or so makes no difference.

I'm debating about just calling in sick that day, or whether I should just be honest and tell them where I'm going. I'm leaning towards calling in sick :lol:

Laurie

Joy S.

Dr. Walters in NJ

Post by Joy S. »

LadyFox,

I am so interested in hearing how you do with Dr. Walters... and I am only about 15 minutes away from Edison. YIPEE!! I'm sure he probably won't take my insurance, but at this point, who cares???? Please post how you make out at the appointment. I'm anxious to hear. Hope it goes well and you find some relief. PS- we must live somewhat close... nice to know. Good luck!!

Joy S.

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Joy, actually at the moment I'm a bit concerned about how good the office may be.

I made the appointment nearly a month ago. They were supposed to send me a bunch of information and papers to presign. I never received anything. I called last Monday and told them and they sounded surprised and said they would find out why and send new ones. Today, is over a week later and nothing!

This is not leaving me feeling very confident. I am thinking about calling another neurologist, one my husband just saw (not the same problem). He's local too, but not a "name" in the field. But, what good is the "name" if their office isn't efficient? Makes me wonder about the doctor as well. I also read some reviews of his partner (a long indian name) and many people said he had a bad bedside manner. He too, is a "name" in the field. So again, being famous for something doesn't make you the best at patient relations sometimes and that matters A LOT to me.

Laurie

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Just an update - here it is 3 days before my scheduled appointment with said "expert" in RLS. As of Friday, I still had NOT received the paperwork I was told I needed to have with me when I arrived.

I cancelled my appointment Friday. I do not feel that I can trust this doctor's office at this point, expert or not. I made this appointment nearly 2 months ago. I can understand them not sending it once, but I did call again a couple of weeks ago to tell them it had not arrived. They seemed so surprised, said they would check into it and said another packet would go out.

So, no packet. I hope I did the right thing. I think you need to be able to have trust in your doctor AND their staff. Thankfully, my case is not as severe as most people here and rather intermittant too. So, I'm going to find another neurologist. He may not turn out to be an expert in RLS, but hopefully he/she will at least have a responsive staff.

Obviously I'm hoping I did the right thing.

Sorry for the vent - I'm really annoyed by this. Thanks for listening!

Laurie

Joy S.

Neuro Appt

Post by Joy S. »

Laurie, Sorry to hear that the appointment did not work out... I was waiting to hear how you did, before maybe looking up Dr. Walters for an appointment... actually I found that he IS on my health plan. But, like you say, actions speak louder than words... and if they cannot even get a packet out to you, then that does make one apprehensive. Keep us updated, and hope you find someone good soon!

Joy S.

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Joy, here's something weird...

I decided that a more pressing issue with me right now is the arm problem I'm having as this is a daily situation, affecting my sleep even worse than the RLS. The RLS has not been unbearable for a couple of months now, only intermittant, thankfully. I have an ulnar nerve problem in my right arm which keeps me up all night long. My orthopedist has treated it thus far but I need a second opinion at this point. That's the short version :D

So, I started looking up neurologists again. I call the number, somehow it seems memorable. I ask the receptionist to recommend one of the doctors in the group for neuromusular disorders and mention that actually it's 3 separate issues (the RLS obviously, and migraines). She asked which was most pressing, I said the arm problem. She suggested a Dr. Grewal, who can treat the migraines too. She says "what is your address, I need to send you a packet".

Suddenly lightbulbs go off in my head and I realize it's the same medical group! Nearly all the neurologists listed in my plan are with the same group as Dr. Walters - there is like 15 of them, all of whom specialize in different neurological problems.

I tell her I'm VERY concerned now, and mention what happened with my appointment w/Dr. Walters. She was very apologetic and promised that this time, the papers would come on time.

Fine. The next day I get a call at home and at work from her. She by accident wiped out my appointment with the new doctor, but...also needed to move the appointment to a week later because he was suddenly on vacation that week. :twisted:

I once again told her how utterly concerned I am with the group. I'm sure you know by now, but this group is with a major hospital and there is no reason such mix-ups should occur.

My husband is begging me to see his neurologist :lol: :lol: :lol:
I just might.

Have a great weekend!

Laurie

Guest

Post by Guest »

Laurie,
Sorry youre having to go through so much in just getting this appointment :roll: . Its bad enough having the issues themselves... Well, I certainly hope things start looking better and you get in to see someone SOON! Keep me posted!
Joyce

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Hi Joyce, thanks for remembering me :)
My new appointment with new doctor isn't until the end of September. Thankfully, because of the Ambien I'm taking to keep me asleep at night for the arm problem, I've been blissfully unaware of any RLS issues. The only time it's problematic is when I'm laying on the couch at night watching TV, usually with the laptop on me. I've mentioned that heat tends to make it worse and the laptop sure does throw off a bit of it. I guess I should stop doing it! Duh! :oops:

Laurie

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear LadyFox,

On a lighter thought, Mercury and Mars are in retrograde and have been for over a month, will finally go forward on the 22nd. During a retrograde communication becomes miscommunication, plans, everything etc has a tendancy go awrye, mistakes happen more frequently, or things have to be done over and over ... I usually don't put a lot of store in such things, but from time to time it seems that is the only explaination...

Atl east this receptionist or whomever was willing to try to get it right!

Yesterday I spent all day working on the website pages for worksite. The program I used would not hold the changes... I'd look at the html code and it was there. Finally I just opened the document in word pad and typed in all my codes myself. Why it worked then and not with the program I was using is beyond me! Must be that retrograde thing! Then again I could be wrong! hahahaha

Sending you encouagement and supportive thoughts in your journey. Hazel

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

It's funny you should write all that astrology stuff. I used to be into doing charts (not very well, but good enough) and I haven't in years. So, I do know what you're talking about. Anyway, yesterday I had a numerology relationship report on my husband and I - it was so accurate it was almost frightening! My husband, quite the skeptic, said maybe they are so generic it can apply to anyone? But I told him no, because if you reversed what it said for him and I separately, it would have made no sense for our personalities.

Thanks for the heavenly explanation :D

Laurie

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear Laurie,

I liked Linda Goodman's moon signs... for numerology. Ahhhh anything to keep the mind focused! Going to ask hubby for lap top for Christmas then I can just strap it on and surf while I pace. As for heavenly, the stormy skies while spectacular cloud formations and lightening with thunder, never did produce any rain, very humid don't know if that has any relationship to my problem tonight or not. Took half a vicodin... numbed the crawling feeling but muscles are tight and cramping... Guess I will have to go do dishes... as sitting here is getting difficult!

I have an appt with neurologist on 31st. Not certain what his experience is with RLS other than the standard response he will do tests and has various treatments ... yet I am hopeful ... I have my questions formulated and that faithful list of do and don't meds, see me row that boat...

Hazel

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Hazel, Linda Goodman's books were some of my favorites!

Laurie

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