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hi all At 16:13 1999/07/29 EDT, jackie wrote, in part: >Hi, I've been reading the digests for a few days now and >thought I would do an intro since I'm going to have many >questions to ask... welcome jackie this is the right place for questions if you don't get an answer 'live' you can always search our archives >During the past two years, my 49 y/o husband saw a general practitioner, >a rehab doc, a useless stint in physical rehab, ..... pd is difficult to diagnose at the best of times more so in young onset folk partly because 'we're just too young' there are five major symptoms and they may manifest in any combination thereof [who's the mathematician around here?] >... His symptom, that had everyone totally baffled and >giving up on him, is that he was dragging his left leg >and when he gets tired it is more pronounced and by the >end of the day his leg will ache... in retrospect otherwise known as 20/20 vision this is a classic beginning: one sided, slowness of movement, fatigue, aching, very similar to the way mine started >Anyway, his neuro doc had him take 1 Sinemet 25/100 twice a >day for 3 weeks. There wasn't any improvement so the doc had >him doubled it for ten days. There was a slight improvement >in his stride, but the arm still just hung there. Last week >the doc added two more 25/100 Sinemet's at noon time for a total >of 6 a day... so he's up to 600/150 mg of levodopa/carbidopa daily in only six weeks? [a lot of people take 6 years to get that far] yikes! in light of 'joe's story', today of all days, my skin crawls, my stomach turns, and my blood runs cold when i hear something like this... too much! too soon! too fast! is the neuro a pd specialist? how many other pd patients does he have? i know that response to levodopa/carbidopa [sinemet] is usually considered the 'acid test' when pd diagnosis is difficult but holy moly! that's a lot of sinemet for a brand spankin newbie and i know that everyone of us is different in our response to meds, but jiminy crickets! in this day and age, there are a whole lot of other med options than just jumping straight into sinemet >The stride is better but the arm still hangs. Also, since the >addition of these last two pills he has had occasional >uncontrollable twitching/jerking of his left hand/arm and also >had a brief (few minutes) spell of light headedness and sweating... no kidding! how about drug induced dyskinesia?! which generally only shows up after five or more years... and how about levodopa overdose?! >I am going to e-mail the doc these latest >developments and see if I can talk to him myself because my husband >doesn't ask any questions or offer a whole lot of info when he talks >to the doctor.... maybe there's two sides to that communication problem! >Right now he has sort of accepted that he has it, but he really >doesn't want to know what to expect beyond today and he is very >content to have me do all the research and educate myself so he >doesn't have to so I just dole out the more positive things I find >out and keep the rest to myself. If he gets to the point of wanting >to know more I'll share it with him but right now this seems >to be the way he needs to handle it so I'm respecting that... yep you have both had a shock his is probably all tangled up with relief that it's not something worse but this diagnosis is a life-changing event for all concerned ignorance=fear knowledge=power please look at my recommendations for reading for newbies on my website in pienet/words/nuggets/pd for newbies especially the 'psychosocial' article on how it would be nice to be 'handled' upon diagnosis of pd [maybe someone [!?] needs a copy of this one] my best unsolicited advice to a newbie parkie is: 1. become the most knowlegeable pd person you know 2. low-and-slow and one-at-a-time titration of any and all meds janet not a medico but i've learned one or two pd things janet paterson 52 now / 41 dx / 37 onset snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada website: a new voice <http://www.geocities.com/SoHo/Village/6263/> e-mail: <[log in to unmask]>