Hi all, Well, golly gee whizzzzz. I finally have an on-topic post for the list and it "got lost" in the "mix." Oh well, I hope the list-folk don't mind a little repetition ... I'll try again: > Date: Tue, 25 Apr 2000 22:44:41 -0400 (EDT) > From: "William A. Parrette" <[log in to unmask]> > To: Parkinson's Information Exchange Network <[log in to unmask]> > Subject: Six of one, half-dozen of the other -- some NON-PD & some PD content... > ... > But, to try to post an actual on-topic message ... > > There has been a lot of talk about Sinemet over the last cou- > ple of days. Now, I know that everybody is different and every- > body reacts differently to their medications. But, I am kind of > curious why I am *so* different? ... or, at least it seems that > way to me. > > I am currently 46 and I was diagnosed four years ago. My > first neuro. put me on Sinemet 25/100 at two tablets a day. I > noticed no change in my symptoms. My second neuro. put me on the > same 25/100 at the same dosage of two tablets a day. Again, I > noticed no change in my symptoms. This doctor bumped me up to > four tablets a day, but there were still no changes in my symp- > toms. My third neuro. changed the prescription to Sinemet CR > 50/200 at two tablets a day, but (again) there was no noticeable > change in any of my symptoms. > > My current neuro. put me on three tablets of Sinemet 25/250 > per day. And, this was the first time that I had noticed any > change at all. Some of the symptoms were actually reduced and it > was noticeable. But, also noticeable, was a major dyskinesia in > the form of my head bobbing a lot when I was talking. This neu- > ro. then "bumped me down" to CR 50/200 at *four tablets a day* -- > and we're talking about maybe pushing that up to five a day if I > can find a way to wake myself at two in the morning. > > What confuses me is that many people that have been discussing > the effectiveness and dosage of Sinemet here in this forum for > the last couple of days have said that they are taking the non-CR > 25/100 -- and have been for many years -- and it does, in fact, > relieve their symptoms. > > Now remember, I'm a paranoid introvert so I almost can't help > from asking "why am I *so* different?" Without being too face- > tious, funny, or silly, does anybody have any thoughts on this > subject? Thoughts, ideas, concepts, criticisms, witticisms, far- > eastern philosophies, ... anything? > > Call me curious today. Curious if an on-topic post from me > will draw any responses. And, as we say in Grand Funk land, keep > Shinin' On ... > ... Then ... > Date: Wed, 26 Apr 2000 19:51:07 -0400 (EDT) > From: "William A. Parrette" <[log in to unmask]> > To: Parkinson's Information Exchange Network <[log in to unmask]> > Subject: Re: Six of one ...PD content / back to the knitting .. > > Hi all, > > On Wed, 26 Apr 2000, the digest contained: > > > Date: Wed, 26 Apr 2000 09:40:40 -0400 > > From: janet paterson <[log in to unmask]> > > Subject: Re: Six of one ...PD content / back to the knitting ... > > > ... > > prepare for the jaNET INTERrogation! ... > > I'm ready, ma'am. But, could I ask you to turn on some > lights, untie me from this chair, take off the mask, and put away > the rubber hose? Please? > > > ... > > what were/are your symptoms? > > pre-diagnosis? ... > > Ever since I can remember, I have had tremors in my hands. > Nothing major, but enough to keep me from doing any kind of "de- > tail" work with my hands. Initially, my *symptom* was what I > would have called a twitch in my right arm. And, my "normal" > shaking had become more noticeable. > > About a month or two after I noticed these symptoms, it had > become bad enough to make me seek medical advice. In addition to > the twitch, the neurologist noticed that -- as I walked -- my > right arm didn't swing as freely as my left. > > > ... > > what were/are your symptoms? > > post-diagnosis? ... > > In the last four years, I have had a variety of symptoms. At > times, I would notice that I would unconsciously clench my hands > tightly. I also developed an ache in my shoulder, elbow, or fin- > gers of my right arm. A little later, I noticed that the muscles > in the right side of my body would tense up. And, on occasion, > my vision would blur slightly or I would require brighter light > to read smaller text. > > These symptoms didn't always build on one another. Sometimes > one symptom would fade while another became more prominent. > There was no pattern -- no rhyme or reason I could detect. But, > when recovering from an illness of any kind, the tremors seemed > to worsen. And, in general, the symptoms seem to be at their > worst in the morning but diminish a bit through the day into the > evening. > > I have gone through a range of styles of tremors. What started > out as a general shaking of the hands eventually changed into the > classic "pill rolling" tremor. Then, it changed to a clasp- > ing/grasping tremor. Either one was controllable at rest. And, > the non-swinging arm stopped for a while and then changed into a > raised-arm/clenching fist position on both sides. > > Eventually, I started noticing the "slowness of movement." > Walking became harder and it would take quite a bit of effort to > do simple things like walking the dog. And, getting into and out > of cars and chairs became a real effort as well. I would have to > expend a great deal of effort using my arms to pull me out and up > into a standing position. > > > ... > > what were/are your symptoms? > > 4 years post-diagnosis? ... > > At the moment, on the 4 x 50/200 CR, the symptom that is still > noticeable is the tremors. I have noticeable tremors in both > arms and both legs. As I remember, the off-Sinemet tremors were > much worse than the current on-Sinemet tremors. And, except for > the Sinemet-induced dyskinesia, these are the only symptoms I now > notice. > > > ... > > in what way were they reduced by the 3x25/250IR sinemet doseage? ... > > The first thing I can say is that I generally felt better. > People who knew me and saw me regularly said I looked better. > The only symptom that I noticed -- as described above -- was the > arm/leg tremors and the dyskinesia. > > > ... > > in what way were they affected by the 4x50/200CR sinemet doseage? ... > > The tremors worsened slightly -- almost imperceptibly. But, > in the year or more since I've been on this prescription, the > tremors have gradually worsened again to be, IMO, more noticeable > and getting harder to hide. > > FWIW, if I can sit, undisturbed, and get my body in a relaxed, > meditative state, many times I can get the tremors to stop. But, > the instant I move -- sometimes when I think about moving -- they > will start up again. > > One other thing, I do have on-times and off-times. There are > periods during the day when the tremors will all but disappear. > While at other times they appear somewhat strong. I have not > been able to determine a schedule or cause/effect or any type of > pattern at all in these on/off times. > > > ... > > why does your neuro think a fifth 50/200CR > > would benefit you at the cost of interrupting sleep? ... > > *Our* opinion is :-) that in the period of time between my > last dose at 6 P.M. and my first dose in the morning at 6 A.M. > that all of the Levodopa has been consumed or used. So, it takes > a long time in the morning to get the first (and maybe the sec- > ond) to kick in and provide some relief. > > So the theory is that the 2 A. M. dose might provide a sort of > "running start" for the 6 A.M. dose to make it more effective. > > And, this is actually more my idea. But, the neuro. said it > wouldn't hurt to try it and see what happens. > > > ... > > why you are on your fourth neuro? ... > > With the first doctor, I had no insurance and the symptoms > were in their very early stage. The second doctor chose to have > some elective surgery soon after I became a patient and was un- > available for approximately six months. The third doctor (excuse > the use of "language") pissed me off. Now, I am on my fourth > neurologist. > > So, Ms. "Kinsey," :-) may I take my had out of the Gom Jabar > now? ;-) Bill-- ...who thinks it is unnerving that a doctor calls what he does "a practice." ,--, .___. 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