UPDATE ON LEE

Just for the record .... your replies also made me feel warm and fuzzy. Thanks.

Lee is doing well and I popped around yesterday and had lunch with her. She is extremely well rested with only taking one temaz/ngt and that seems to be keeping the RLS under control. Very happy girl.

I don't know how you guys reacted but when I was first diagnosed and found out what had been causing me so much anguish one of my first reactions was anger, particularly toward the medical fraternity. Lee is somewhat still a tad confused but is also bordering on anger. I've told her that it's ok as that's an emotion that we've all experienced.

Could do with a wee bit of advice please. Lee wants me to attend her appointment with her with the specialist. Her husband does too, however I am feeling a tad hesitant, as I don't want to cross any boundaries.

What do you reckon?

[mantel]

The first doctor ( a locum) I saw when I tried to explain my symptoms gave me a prescription for something that turned out to be for circulation problems. I took it but went back the following week and saw my regular GP and she listened and prescribed me Ropinerol which for over 15 years was my miracle pill.

My GP knew all about RLS and told me that the Locum I first saw was an idiot as it was nothing to do with poor circulation but was neurological. At the time I was first prescribed Ropinerol it had not been licensed for RLS . My GP said she had been reading that a drug used for Parkinson's Disease had been shown to help RLS sufferers and was prepared to prescribe it off license . At the time all this was quite new so I guess I was incredibly lucky to get help from a well read GP within a week of first seeking it.

Personally I feel anger never helps anyone. Although we all feel it from time to time it is a negative emotion that is not good for our health 'Calm is best'

I know how tempting it is to shout and get cross when mistakes are made but in the long run it is best to calmly explain your disappointment and that ( in Lee's case) it is distressing to find out that you have been suffering for all this time unnecessarily and if you had been given the right advice and medication 18 months ago a lot of pain and suffering could have been avoided.

If it were me I would write a letter to this effect to all the medics that fobbed me off with poor advice or no help. I would also send them an information sheet on RLS hoping that they would read it and be more informed for the next RLS patient who walks through their door.

You may well be the best person to go with her as you will understand more what is being said but I think it best to keep quiet unless you really think she is being fobbed off with no treatment again. It is difficult as no doctor likes being told how to do their job but at the same time if you know she is being given bad advice you need to question it, but do it in a constructive manner.

[Hidden in reply to mantel]

Great answer thank you

[Hidden]

I agree with mantel, but can I also add my stuff?

First of all: you are doing so well with her!

Second: Your question sparked an internal debate in me. It is a case of boundaries here, so yours is a tough one to answer.

My initial response to your question was (and might still be):

"no, she needs to go in alone with her husband so they can sort this out as a family. What she tells you and what they go through as a family are two different things. She needs to explain what she goes through and he needs to explain what he has observed/is observing. She (as in you) are not part of the family. This is definitely crossing boundaries. It's one thing to be there for someone, but quite another to start going to doctor's appointments with them."

But I didn't dismiss it there; my thinking became:

"well, it is Lee's wish for her to be there, and who is to get in the way of a personal wish?"

BUT then my thought became:

"ok, I get it, Lee is scared and overwhelmed, and so is her husband. She has found someone who has been able to put a name to what she has been going through and who has been acting as her emotional compass during this desperate time; who wouldn't want that kind of support with them on an official step? BUT I'd still be hesitant about going with her"

So...I guess my official answer becomes:

"yes, go with her, if that is what she wants. Maybe Phogan can sit in the waiting room. Oh, wait? But what if the doctor brings up names of meds. and Lee needs help? In that case yeah, Phogan can sit with them in the dr.'s office, but let Lee and her husband do the talking"

Hope this helps. Sorry if it's confusing.

Wish her good luck from me!

[Hidden in reply to Hidden]

I agree with Jess3648 's back and forth thinking. For me boundary decisions are always hard. I want to take care of myself but I also want to help the other person. I would bet Lee is nervous and insecure about the visit also because dealing with doctors is hard for her. Perhaps you could help her develop the mindset we all need when dealing with problematic doctors. We are their customers, NOT excess baggage. And if not for us- the patients-they wouldn't have a job. There was a 1/3 humorous-2/3 serious saying I heard when I was still working; " If it weren't for the patients we could get our work done." What's wrong with this picture???

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If she wants you to go with her then do so. She obviously needs your support, and probably worried the doctor will prescribe a med that will make RLS worse rather than help. I cant see it would be an issue as long as you would KNOW if the med her doctor did prescribe wasnt a good one. No point in her coming out with a med thats going to make things worse. Good luck.!