 |
 |
hi all At 08:02 1999/02/17 EST, joan wrote: >Have just become a member and am overwhelmed with mail. I find it >all so important to read I haven't been able to ask questions. I'm >a caregiver and two immediate helps I need are: >l. My husband has severe cramps in his legs - thighs & calf. Dr. >hesitant to prescribe pain medication as not familiar with this. >Pain is severe in off time. Does anyone else experience this? >Any recommendations? >2. We are on our third doctor and none have seen the severe shaking >that occurs at the end of the day when the pills are what I call "worn >off". The tremor is severe for about an hour, preceeded by "correa". >Then the tremor stops, but he is rigid -- off time. Anyone have an >experience with this? Thanks for your input. >Joan please give us more detail as to your husband's med schedule: what, when, and how much? how long has he had pd? who made the diagnosis? why are you on your 'third doctor'? how many other pd patients does this doctor treat? at what stages? 'on/off' fluctuations tend to become noticable after years of taking sinemet when the body/brain response to sinemet becomes more and more sensitive the cramps and pain that you describe seem to me to be related to 'off' times i.e. under-sinemetized the tremor and chorea movements you describe seem to me to be related to 'end of dose' fluctuations which all sounds to me like your husband's sinemet doseage level is having a roller-coaster effect with strong peaks and valleys all parkies eventually have to 'fine-tune' their sinemet intake in order to avoid the peaks and valleys the simplest way to test this in your husband's case would be for him to take half as much sinemet, but twice as often [with no overall change in the daily total amount] [with his doctor's approval] [e.g. modify a schedule of one whole 10/100 tablet every 4 hours to one half of a 10/100 tablet every 2 hours] please note i am not a medico, just a nosy parkie! also please note it is critical to your husband's health that you both become as knowledgable about pd as you can you have to become your own strongest advocates there is still a lot of ignorance out there in medico-land in re pd's long term medical/chemical management that ignorance might be behind your husband's current discomfort we have seen that type of ignorance become life threatening 'tweaking' with our brain chemistry is no joke in my humble opinion it is critical for him to see a medico [preferably a movement disorder specialist] who is up-to-date and willing to work with you in re being 'overwhelmed' with mail you might want to try the 'digest' version of the list let me know, and i will send you instructions janet janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada <http://www.newcountry.nu/pd/members/janet/index.htm> [log in to unmask]