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Restless Legs Syndrome
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Hi everyone. YAY ... We finally have a date for Lee's appt with the specialist. Friday 22nd Sept. She is extremely excited.

Her questions were quite amazing and somewhat humorous.

'What should I wear, what do I call him, what if he doesn't like me, what if I don't like him'?

I asked her what about questions about RLS; like ... how will this certain medication help me, what are the side effects etc etc

I already know all that, you told me. I explained to her that I've only passed on my personal experience and that what works for me won't necessarily work for her. Plus I'm at the other end of the spectrum, she's just starting out.

WRONG. Then the excitement turned to panic. My advice was No 1 (and most importantly) tell him that the person who advised you that it sounds like you've got RLS was a non professional/stranger, albeit someone who has been diagnosed with chronic RLS by a specialist in the field of RLS. Explain your symptoms in your own words, tell him how RLS is effecting your quality of life, ask him questions regarding augmentation (a word that I'd never heard of before joining this group and which now frightens the bejesses out of me). If you don't understand something he says, just say, 'I don't understand'. Tell him how you were feeling the day we met.

I have informed Lee of my decision to accompany her to the appointment, however I would not attend consultation, but I would be in the waiting room.

9 Replies

You are being so supportive! Maybe suggest to Lee to write a list of (keywords) the things she needs/wants to tell her doc and to put that on the table for hin/her to see. Still helps me a lot, even while I am 'cool' and experienced with docs.

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Thankyou good advice and will pass it on


Fingers crossed it goes well.

Always best to write down all questions, tick them off as you ask them and jot down any pertinent responses.

If her Dr has referred her then I'd imagine there is no need to mention yourself as Drs tend to be very wary when others 'diagnose' (I know you aren't but I doubt they'd look at it that way).

He will have all relevant info, (or SHOULD), from the referring Dr who would not have refereed for investigation into RLS had she not met some of the diagnostic criteria for RLS. If needs be she can say I was experiencing.......................for .............years. I spoke with someone who said it sounded like RLS. I went to the Dr who said...........and gave me............... which worked well/didn't work well. I've done some reading and discovered................!

I can't see the Dr looking any information other than what symptoms she is experiencing, (some times you get a more human and interested one....some times!).

Wish her all the best and good luck.


Great advice again. I have given her a copy of my 'Quality of Life' statement and left her this afternoon madly hitting the keyboard.

Where you guys like that when you first attempted to do yours?

I was possessed. Firstly had absolutely no idea what one was or how to go about it. Then a contact on the California RLS website sent me an except from hers.

Well ... once I began I couldn't leave it alone. I found it to be extremely cathartic and refreshing, altho it did, at times, raise more questions than answers.

I surprisingly found, thru this somewhat exhilarating experience, that the little round pegs suddenly all fit and consequently just simply fell into place.

Amazingly to me ... parts (important parts) of my life began to make sense.


Never carried out a quality of life statement, never heard of them until tonight!

My story as more like I was told as a child it was growing pains therefore to me it was growing pains until I was 21 then I figured it was madness/in my head. On getting access to the internet I discovered what it was, went to GP and explained my situation and started on Mirapexin. What a pleasure when I hear how others have had to battle Drs.

I'd have done a fair few pages if I were to do one I'd say.


Ummm mine (after several drafts) is 5 f/c typed pages


Ok, to tell you the truth, her response to you re RLS questions scares me a bit. I mean, she does know that everybody has different experiences, right? Great job in how you responded, though! Yes, she needs to tell her experiences, not yours. I'm a little worried now about how she'll handle the appt (and treat you -- I don't want her to 'turn' on you, if you know what I mean), so just be careful.

(BTW, I am in no way saying she's a bad person and that you shouldn't help her out. I'm just a little weary because I have a good friend back home who I'm helping get through a rough time. While I'm able to help her out, I do feel as though I spend half my energy cleaning up my messes. "But, Jessica, you said that would work!" "Ummm....no, I said it might work. There's a difference.")

Best of luck to her!

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Thanks for your constructive advice. I so understand exactly where you're coming from. I am leaving here in 2mths (but who's counting).

Lee's already showing signs of apprehension eg: what will I do when you're gone? I had the perfect reply ... You will join HU.

As Lee could soon be joining, let's just say I'm so glad that I was in the right place at the right time. I will definitely keep in contact and I wish her nothing but the best of luck.


Not surprised... Your reply was awesome!!

So, are you moving?


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