Restless Legs Syndrome
10,536 members6,522 posts

rls

why is it at PAPWORTH HOSPITAL you never see your own consultant regularly or you see a different person every time,i'm due to see them again soon,and my legs have been ok on meds up till now,but now i find myself overdosing on 4 extra a night and then it does'nt always help.......maybe i should just chop them off

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I am in the US, so have no idea about that hospital, but it seems your experience is not uncommon.

What are you taking for meds?? Will comment concerning that after I know at least what class of meds you "are overdosing" yourself on. Some meds will turn on you if the dose is too high, re: Parkinson's meds.

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meds are --gabapentin 100mg caps.....2 morn/2 after/2 bed....ps thank you for replying

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I tried gabapentin one time and felt the same way. Have you tried requip. Much more affective.

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Hi Dellboy, all I can say is that it's the same thing wherever you go, and for whatever reason. When I was pregnant I never saw the same midwife etc twice at the hospital. It's like at your GP surgery as well. I have never seen my own GP (ie the one I'm registered with).

If there's a problem in that you're having to repeat yourself over and over again and they don't seem to have your notes then I'd have a moan, but really I do think that this is just the way it is for everything I'm afraid. Unless, of course, you can go private!!

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see your point..put up or shut up..lol.....have moaned to no avail

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I have been tempted to chop them off frequently but I am sure I will then suffer from 'ghost' RLS in the legs that are no longer there and then be unable to move them which really would drive me insane!!

I waited a year for my repeat appointment at the hospital only to turn up and find my specialist was on holiday. I was seen by one of the neuro team who said she didn't really know much about RLS which was very frustrating! To be fair I would have rather waited till she was back from her holiday than see someone who didn't really understand my condition.

My next appointment is January so I am hoping I will see the right person this time. Continuity is definitely more beneficial with appointments.

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thank you for your reply

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Take good notes. Ask the doctor to summarize notes for the next doctor

to see in your notebook...Keep a diary of what you tried specifically

and how it worked, failed to work...in few words as possible..have that

ready for the doctor to glance at.

Take notes of your activity level, emotional state, how it impacted your

life daily...stress levels help the doctor make a fast judgement as to

a next step..

The easier you make it for your doctor with graphs of the above,

notes...the more effective your visit will be.. He/ She will see that

you are making a sincere effort to be active in your treatment.

Doctors like Pain/ annoyance Numbers like the pain scale...of

1 to 10...try doing that for the doctor..

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yikes thank you,i do keep a diary,but your idea is a good idea,and i will take on board and get back to you

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It's such a pain to be so orderly but in your case, you are the

manager of your RLS and any other issues that you have going

on. Make the most of your doctor visits. =)

Be honest in your self medicating with the doctor. I have done the

same in overdosing. The doctor knew then that it was time to change

up my medicines. If you fail to admit it to the doctor, you stand a

chance to stay on the same medicines. Just make sure to tell him

if your increase in the dosing helped and anything else that went

on with yourself at the time.

I don't mean to lecture. I have been standing in your shoes for a

long time. I am 45 yrs old and I have 3 different doctors who

fail to have good communication. I have to be my own manager.

I wish you success in getting exactly what will work for you. =))

Karen USA

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