Movement

For everything and anything else not covered in the other WED/RLS sections.
waterloo2
Posts: 466
Joined: Fri Mar 16, 2007 5:51 pm

Movement

Postby waterloo2 » Thu Aug 05, 2010 12:01 am

Hi all
Firstly, am not very good with words so hope you understand what I am trying to say.
I am having another terrible night am going to see a dr hopefully next week that specialises in rls not sure what he can do for me but am going.I have just had horrible seizure type movement for a few seconds has anyonelse had this at all.
Please reply.
Gill (UK)

Polar Bear
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Postby Polar Bear » Thu Aug 05, 2010 3:26 am

Sorry you have had this seizure type movement which must have been pretty alarming on top of everything else.

Before you go to see this new doc I suggest that you take time to write down all of your ailments even tho rls will be the priority for your visit, and also write down all of your medications and the condition that you take them for. Also write down medications you have taken in the past that have not helped rls.

You say that you are not sure what new doc can do for you...... What he can do for you - is work with you to find some relief from your rls symptoms.!!

What about taking with you a print out of the Mayo Clinic Algorithm and this will give him a guide for both of you to discuss. The link to the Algorithm is in my signature.

Hubby or a friend with you at the appointment may be a support and can also reinforce your distress and need for help.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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SquirmingSusan
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Postby SquirmingSusan » Thu Aug 05, 2010 3:31 am

"horrible seizure type movement" as in your body was moving without you wanting it to?

Ever since augmenting on Requip, I have had a lot of myoclonic jerks. They are not regular PLMs, but involve my whole body. Once my back muscles spasmed and it lifted me off the bed. My whole body will jerk. Does that sound like what you had?

I agree with PB. Make a list of what bothers you. Maybe prioritize so that if you're pressed for time you can focus on the top 3 things. Bring someone else to support you with the new doctor. I hope it goes well.
Susan

waterloo2
Posts: 466
Joined: Fri Mar 16, 2007 5:51 pm

Postby waterloo2 » Thu Aug 05, 2010 5:24 pm

Hi Guys
Thanks for your support much appreciated. I also get sudden jerks they are killers for my arthiritis in my knees. I am riddled with arthiritis all through my body. pb the med im on or have been on are on the computers. I can't ring for appointment until tomorrow at 2 pm as dr he has been on holiday not due in his office until monday.
Another bad night last night.
love gill

Polar Bear
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Location: N. Ireland

Postby Polar Bear » Thu Aug 05, 2010 7:39 pm

Yes Gill, I understand that all of your medications would be on their computer, but it means the doc has to look back up your lists/visits etc. etc. It is not easy for you to look at the computer screen with him.

I find if the information is all written on paper it is easy for both you and the doc to look at it together, point to a particular point/med, know that you are both talking about the same thing.

You need help with rls symptoms.... arthritis pain..... getting some sleep.
It may be that only one issue can be covered, i.e. rls

You have to tell the doc that you need help. that your quality of life really matters. Tell doc that you feel perhaps rls is not taken seriously because it is not life threatening but it is your condition and pretty damned serious to you. (don't say damned....!!..)

If necessary, say that you find it difficult to put across how distressing the condition is to live with, it may be that you get upset or tearful when talking to doc, which shows you are distressed at that particular time but may not actually explain the real trauma of living with rls.

Please consider writing down the effects of rls on your life and actually giving this to the doc to read, this means that you don't leave anything out or get emotional and off track.

I always go into the doc armed with a sheet of paper with my questions and points written down and have no hesitation whatsoever in sitting with this in front of me. Doc can see that I have it. (I reckon his heart sinks when he sees me and my sheet of paper but I don't care)

Discuss the medication/s for rls (whatever the med was) - what worked, didn't work, or was only so so.........
Is it possible that you were undermedicated.
Tell doc you want to discuss where you go from here.

Will you have someone with you at the appointment.... consider this please. They can help if they know how the condition affects you.

The Mayo Algorithm is the guide.
Do you have it printed out???

You say you are seeing a doc that specialises in rls.
And you say that they will have all your med details on the computer.
Does this mean this doc is at your health centre, rather than at a hospital.
If so is he a new doc, or is it just the first time you have seen him.

Or is he a specialist at a hospital, I get the feeling you mean your local health centre.

If he is a specialist in rls and is at your local health centre why haven't you seen him before?

If he is a specialist in rls then he should be fully aware of how distressing life will be living with rls.

Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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