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hi cyber syblings ellen initially wrote to me privately about this and i've taken the initiative to post my then replies to her for your comments and corrections ---------- ... i am not a medico by any stretch of the imagination just another parkie with maybe more curiosity and stubborness than most ...pd can be misdiagnosed in as many as 25% of cases but i've always understood that positive symptomatic response to sinemet is generally accepted as the 'proof of the pudding' so, at first glance it would seem that since steve didn't exhibit any improvement after starting on sinemet it would make sense to doubt the pd diagnosis however, on a slower second reading, i noted your words: >On Sept 24, put on 25/100 Sinemet three a day. >Slowly increased to six per day. >No improvement - actually a lot less energy, >somewhat less mobility and total loss of appetite. these symptoms could be a chain reaction: the loss of appetite can be parked squarely at sinemet's door the loss of energy could easily be a direct result of the loss of appetite the loss of mobility could be tied in with the loss of energy when i started on sinemet 9 years ago, my neuro's advice was to go 'low and slow' i.e. the very gradual 'titration' of the med level to avoid side effects and discouragement so i was started on 1/2 tab 25/100 three times a day, with meals, [i.e. 25/2x3 = 37 mg carbidopa and 100/2x3 = 150 mg levodopa per day] as near as i can recall i was on that level i believe for at least a week and then observed symptoms for any improvement and then bumped up to 1 tab plus 2 half tabs for at least another week [i.e. approx 50 mg carbidopa and 200 mg levodopa per day] sinemet is infamous for causing stomach upset and nausea [the carbidopa is in the mix to help minimize this] if i didn't have something to eat with mine, i would instantly get incredible stomach pains i wonder if steve's neuro might have started the sinemet at too fast a pace? to go from zero to 600 mg levodopa in just over two weeks if i understand your message correctly [sept 24 to oct 10] sounds way too speedy to me for a newbie if steve didn't have all the other symptoms you mention but just the tremour, i would fully understand the rethink on the pd diagnosis ...as far as i have learned and read, on and off this list any new meds or any changes to meds should be tackled with the utmost slowness and care just to put the cap on my own tale after ***three*** weeks of very gradual 'sinemetization' i was transformed from a shuffling, stiff 141-year-old to a 41-year-old one-woman marching band! you say the neuro is 'one of the best' in the area... how many other parkies does he have as patients? is he a 'movement disorder' specialist? if he is open to further info/advice [a good test of any doctor's 'bed-side manner'] why not try the sinemet again, but verrrry carefully this time? and always with food [for a new parkie]! >My husband is not eating, and not drinking enough water. When I try to >insist, he says he will throw up if he eats or drinks. He is not >uncooperative. He wants to eat, but says he just can't. He is not >difficult, and he is not nearly as depressed as I. it might even be an idea to get him cleared of all meds for a few days or however long it might take to get his appetite back to where it was and then start again. from my viewpoint he's been on a bit of a med roller coaster at high speed [a week on this, a week on that, a week on the other] and may need to take a bit of a breather! my philosophy is one tiny little step at a time... with one med at a time... >I will suggest what you said to [the neuro... If he doesn't >like my making suggestions, then let that be his problem. good for you i truly believe the period of 'doctor as god' is over [and that is good for all of us, including the doctors] but in lieu we have to become our own strongest advocates with this list as a resource, that is one challenge tbat is easy >Steve had a brain MRI with no significant findings inconsistent >with a man his age. He has had lots of blood tests done. Some >on 24 Sept, more on 20 Oct. Also a chest x-ray. my understanding is that since there is no definitive 'test' for pd [other than postmortem!!] all these tests are usually done to eliminate other possiblities >How many people do you know who are first diagnosed at age 79? Don't >people usually develop PD somewhat earlier if they're going to get it? my impression is that the dopamine-producing cells in the substantia nigra start to die off as part of the aging process but symptoms don't show up until 80% of them are gone and that we would all get pd eventually if we could live long enough! there is some thought that some pd is trauma- or chemically-induced which could account for some young on-set cases [likely me] and there has been some indication of some pd being inherited or at least occurring more frequently in certain families >...he had it for at least 18 months and who knows how much longer. this is pretty typical the symptoms develop very slowly and gradually i had symptoms for over 3 years and scared myself silly before i was diagnosed ---------- your cyber-sis janet janet paterson - 50/9 - sinemet/selegiline/prozac - [log in to unmask]