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Posted by For Stacey on July 04, 2000 at 11:38:22:Alice did not have a lot of pain with her RLS. I'm going to punch in a note I sent to another party. Were you referring to Mayo when you said they were full until October?I would suggest that you get your Dr. to make the appointment. That's what I did when I confronted our Dr. with my dissatisfaction of our lack of relief. He got on the phone to Mayo and we got in in a couple of weeks. If that doesn't work let me know and I will give you the Dr.'s name and phone # with our recommendation. Ken
Here goes. Alice got so bad her legs would jerk up to her chest while laying down. Went to the Doc and he prescribe sinemet. To make a long story short other docs, neuro guys, got involved and the medicine got out of hand until she almost died. We went to Mayo where we found out that she was on 5 times as much sinemet as anyone could possibly tolerate. This in addition to klonopin etc. The Dr. talked to us for 2 1/2 hours and finally sent us home to withdraw her from all meds. After two miserable weeks she was off all the meds and he put her on mirapex and she has been just fine since last Sept. Our advice has to be that one should not trust treatment for RLS unless the Dr can show evidence they have a lot of experience with it Dangerous. While we were at Mayo I asked the Dr there if he sees many patients with Alice's type of symptoms. He said only about 7 to 10 a week. I think it is not unusual to have neuro and other Drs with no experience. Just my opinion but with a lot of experience with a few Drs. Alice is now on .5mg mirapex a day and that is all. Complete recovery. Anything we can do to help call on us. This would include the Dr"s name at the Mayo Sleep disorder clinic. Good luck Ken
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