I have been a member now since 2006 or 2007, but don't always get on this site. I am most appreciative of all the suggestions that folks have given me in the past with medications and symptoms. I have also utilized The Ask The Doctor forums for advice too and this has been most helpful in dealing with my illness and sharing their advice with my doctors. What is helpful for me is reading the experiences of someone else with similar symptoms as I have.
I guess one of my mistakes may be waiting longer than I should do dose etc. I have not always followed a strict time table, as things change so much in my home life etc. So maybe, I have payed the price for some of this. My current program is Azilect and Sinemet 25/100. I take the dissolvable sinemet in th A.M. hours starting
usually at 7:00A.M, however this sometimes varies by 15 to 30 minutes. I know some say that if you are not strictly on time with a dose than this can throw things off. The precription dosage, says 1 3x per day and but does not break it down to specific hours etc. I then take anotheer sinemet about 9:30 or 10:00 A.M. and another approx 11:30A.M. or 12:00P.M. I then take the regular sinemet throughout the rest of the day spaced approx 2 1/2 hours apart. I think sometimes, I go over the 2 1/2 hours though, when I get busy with things. I have about 5 more doses after the noon dose that are space out in this fashion. Since, a lot of times, I'm up until after midnight, I try leave 2 of the 5 left for the wee hours of the morning. This has worked for me for quite a while but in the last 6 months it seems as if things have been changing for the worse. I am not real old yet still in my 60's, but it seems like the dystonia thing and muscle cramps etc. have increased in frequency and intensity. I started out just having dystonia problems just in my left leg and foot causing my foot to arch or turn inward, but now it;s been happening on the right side also. It also used to happen just in the early A.M. hours, but has been happening at other times of the day. It's particularly scary when, you're in the car and trying to drive when this comes on and I just have to pull over until this wretched muscle lockup starts to release again, which may take an hour or sometimes 2. Anyway, I haven't found any answers yet as to what is causing these more frequent upsets, but it could be due do any number of things, I guess. I have recently been to an MDS Dr., and he has added Mirapex to my program, which I have always been reluctant to take because of the potential side effects. I may have to concede though and try it out again. My Dr. thinks after listening to me and viewing some videos that I took of my symptoms, plus extensive in office testing, that I am actually under medicated. So that could be.
Anyway, I didn't intend to be so lengthy here in this discourse on my disease situation, but wanted to give enough information, so that others who read this and may have or be experiencing the similar things may be able to offer or share their advice on what they are or have done. I may at some time need to have the DBS surgery, but I don't feel that I'm in the position where this is my only option, with the other drugs and methods that are out there. I have heard that some have taken botox injections for dystonia, so would be interested in hearing from anyone, who has had this too.
So, lastly thanks for all of your input and advice. It is very helpful for everyone to be able to share their experiences, ideas and methods in dealing with the symptoms of this disease.