This morning I went to see my kind and friendly neuro.
We talked about the psychological effects of RLS, how it disrupts your life etc. He is always eager to hear my stories and talks to me af if I am his collegue. Very nice to treat me like this, especially as he is a well-known neuro, who published in the Lancet (narcolepsy is his thing).
I took with me the story about dr. Walters having done a small study with EECP treatment. He read it with much interest.
I told him how difficult it is to live with RLS and that I have an overall fear for meds not working anymore at all at a time in future and that there is only one option: suicide. I wasn't emotional at all, I just can say these things very calmly, because I mean what I say.
He knows that I am not in the least depressive and I treasure life, albeit so different now.
He asked about my husband, if we still go out together and on my negative reaction asked if my husband did things on his own and I told him that I am glad he does.
Last but not least he said that I know so much about RLS by now, that he is learning from me and asked if I would think of writing a book about my experiences.
Well, I have to think that over, but isn't he a nice guy? I feel really honoured.
We will continue with Neurontin. I am allowed to up it gradually to 2400 mg.
That is to say: if the side-effects aren't too bad. I am on 1200 mg at the present.
He stressed the point that it is best to live in the present. New meds will come and new treatments. So try not to worry about tomorrow.
I asked him if it wouldn't be a better idea to up the Requip (I'm on a reasonably low dose of 1mg).
Again he stressed the point that he is no adversary of higher doses. He has been in an international committee about Requip. He knows that many docs prescribe much hihger doses, but he keeps on saying that he feels more is not better as regards to DA's.
Corrie
neuro app
Good for You
Corrie,
it sounds like a great visit with your doctor. Lucky you to have a doc that cares andd listens. That is so helpful.
I truely understand your concerns for the future. I hope that the thought of suicide is not an option, we need your voice around here. I know you weren't talking about right now, but still wanted to tell you that.
Lucky that has never been a thought for me. I always think there is hope, I pray it stays that way.
It's hard right now to see the hope, I feel the same way about getting out and doing things many more times than not. I had to shop yesterday March birthdays are big in my family. Tired and worn out already.
This morning I've been asked to bowl for a team here in town. It's early for me and sleep didn't go as planned last night. I refused to look at the clock the 10 or 20 times I woke up last night. Before I open my eyes this morning I knew I had legs.....bad ones. Bowling will be tough, painful, and will likely spend my energy this afternoon. But I'm going. I just can't do as much normally as I could at one time. It sucks. It's hard to stay at home this way, would be much better if it were my choice, not my body's.
That is a wonderful chance about the book. You may be able to make a change for yourself and someone else. Good luck with that.
Also good luck with the Neurotin, I do hope that it works and your body takes it well. Do you have pain with your RLS?
Hope things are well for you today across the pond.
it sounds like a great visit with your doctor. Lucky you to have a doc that cares andd listens. That is so helpful.
I truely understand your concerns for the future. I hope that the thought of suicide is not an option, we need your voice around here. I know you weren't talking about right now, but still wanted to tell you that.
Lucky that has never been a thought for me. I always think there is hope, I pray it stays that way.
It's hard right now to see the hope, I feel the same way about getting out and doing things many more times than not. I had to shop yesterday March birthdays are big in my family. Tired and worn out already.
This morning I've been asked to bowl for a team here in town. It's early for me and sleep didn't go as planned last night. I refused to look at the clock the 10 or 20 times I woke up last night. Before I open my eyes this morning I knew I had legs.....bad ones. Bowling will be tough, painful, and will likely spend my energy this afternoon. But I'm going. I just can't do as much normally as I could at one time. It sucks. It's hard to stay at home this way, would be much better if it were my choice, not my body's.
That is a wonderful chance about the book. You may be able to make a change for yourself and someone else. Good luck with that.
Also good luck with the Neurotin, I do hope that it works and your body takes it well. Do you have pain with your RLS?
Hope things are well for you today across the pond.
-
cornelia
Becat,
good for you! Choosing to go and do some bowling in spite of a bad RLS-night. I admire you for that.
I don't anymore. I know from experience that doing something really nice with my friends has become a burden. I come back home and am exhausted, which of course makes the RLS act up like hell.
But every now and then I am able to have a coffee with them for an hour or so, but only ad hoc. No planning beforehand; that's not possible. I have learned to live this way, but I don't like it at all, it limits my social contacts a lot!
The neuro has made me a bit restless in the sense that I think I should actually write the book. If I decide to do the job then Virginia Wilson will be my example.
Yes, I have hope for the future too. No suicidal thinking now, don't worry.
Thanks, Becat.
Corrie
good for you! Choosing to go and do some bowling in spite of a bad RLS-night. I admire you for that.
I don't anymore. I know from experience that doing something really nice with my friends has become a burden. I come back home and am exhausted, which of course makes the RLS act up like hell.
But every now and then I am able to have a coffee with them for an hour or so, but only ad hoc. No planning beforehand; that's not possible. I have learned to live this way, but I don't like it at all, it limits my social contacts a lot!
The neuro has made me a bit restless in the sense that I think I should actually write the book. If I decide to do the job then Virginia Wilson will be my example.
Yes, I have hope for the future too. No suicidal thinking now, don't worry.
Thanks, Becat.
Corrie