Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Timo: Pam posted this last year, when we were talking about amenia then. This posting was on Nov 21 , 2001 and came from Abstract on SDS/MSA from conference Nov 6 1998 . This messages was #21838 . We had alot of talks on this same thing around this messages. Fred has always tested Anemia, but the doctor always told us it wasn't from not eating right. This was before the sign's of the MSA, but who know's it could of been just the start. take Care Vera Quality of Life in MSA: A National Survey. S. Dickinson, E. Garland, G. Farley and T. , Vanderbilt University, Nashville, TN, USA Multiple system atrophy (MSA) is a progressive neurodegenerative disease that occurs sporadically and causes Parkinsonism, cerebellar dysfunction, and autonomic insufficiency in any combination. To better understand the physical effects and the impact that this disorder has on lifestyle, we surveyed a national population of MSA patients. Completed questionnaires were received from 55 males (age 64.6±1.3 yr; mean±SEM) and 29 females (age 64.2±1.8 yr). 99% of the respondents were white and 93% were married. 93% had completed high school, 46% were college graduates and 21% had completed postgraduate studies. Symptoms included: weakness in legs (87%), low BP standing (81%), constipation (77%), bladder dysfunction (61%), imbalance w/o dizziness (55%), loud snoring (50%), nasal stuffiness (42%), bladder infection (39%), supine BP 160/90 or higher (33%), and mild anemia (13%). Among medications, fludrocortisone was most commonly prescribed (50%). Of the persons who took fludrocortisone, 71% felt the drug was helpful. 26% of respondents were taking midodrine, 82% of whom found it helpful. Sinemet use was reported by 42% of the subjects, and 77% of these reported it to be helpful. A mean of 5.1±0.4 yr elapsed between the onset of symptoms and diagnosis. A subsample (n=12) contained responses of caregivers of deceased persons diagnosed with MSA. Death occurred within 8.9±1.1 yr of symptom onset (range of 1-18 yr). Difficulty in performing various activities of daily living (ADLs) was assessed, with a score of "1" representing no difficulty and "5" representing an inability to perform the activity. 63% of subjects were unable to drive a car, giving this activity the highest difficulty score (3.9), and 35% were unable to walk outside (difficulty score 3.6). Only 2% of respondents lived alone. 89% reported that the spouse was the primary caregiver. While only 36% used services requiring a fee (nurse, aide), 69% indicated that they did use medical equipment. 20% had quit work or retired in the last month, while 13% had applied for disability. Results from this survey provide information on quality of life issues in the MSA population. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 GOOD POSTING. I WILL LIKELY COPY AND GET TO MY INTERNIST. REASON IS THAT I HAVE TESTED POSITIVE FOR ANEMIA FOR A WHILE NOW. WHEN AT MAYO, THEY TOLD ME I HAVE " ANEMIA OF CHRONIC DISEASE " - YET MY IRON WAS IN RANGE, B VITAMINS WERE IN RANGE, AS WAS MY PROTEIN. OH YEAH... THAT " CHRONIC DISEASE " - THEY SAID " WE STILL DON'T KNOW WHAT YOU HAVE " :-) GO FIGURE. ALL THEY COULD TELL ME WAS THAT I DEFINITELY HAVE AUTONOMIC NEUROPATHY. HAVE GOTTEN WORSE SINCE THEN, BUT HAVEN'T GONE IN FOR ANY MORE TESTING. MAY BE PURSUING VANDERBILT, BUT HAVE TO WONDER IF IT'S REALLY WORTH THE ENERGY, TIME AND MONEY. OR IF THAT WOULD BE BETTER " INVESTED " IN DAILY LIVING :-) CATCHA LATER, AND HAVE A BLESSED WEEKEND. PAUL > Timo: > Pam posted this last year, when we were talking about amenia then. This > posting was on Nov 21 , 2001 and came from Abstract on SDS/MSA from > conference Nov 6 1998 . This messages was #21838 . We had alot of talks on > this same thing around this messages. Fred has always tested Anemia, but the > doctor always told us it wasn't from not eating right. This was before the > sign's of the MSA, but who know's it could of been just the start. > > take Care Vera > > > Quality of Life in MSA: A National Survey. > S. Dickinson, E. Garland, G. Farley and T. , Vanderbilt > University, Nashville, TN, USA > > Multiple system atrophy (MSA) is a progressive neurodegenerative > disease that occurs sporadically and causes Parkinsonism, > cerebellar dysfunction, and autonomic insufficiency in any > combination. To better understand the physical effects and the > impact that this disorder has on lifestyle, we surveyed a national > population of MSA patients. Completed questionnaires were received > from 55 males (age 64.6±1.3 yr; mean±SEM) and 29 females (age > 64.2±1.8 yr). 99% of the respondents were white and 93% were > married. 93% had completed high school, 46% were college graduates > and 21% had completed postgraduate studies. Symptoms included: > weakness in legs (87%), low BP standing (81%), constipation (77%), > bladder dysfunction (61%), imbalance w/o dizziness (55%), loud > snoring (50%), nasal stuffiness (42%), bladder infection (39%), > supine BP 160/90 or higher (33%), and mild anemia (13%). Among > medications, fludrocortisone was most commonly prescribed (50%). > Of the persons who took fludrocortisone, 71% felt the drug was > helpful. 26% of respondents were taking midodrine, 82% of whom > found it helpful. Sinemet use was reported by 42% of the subjects, > and 77% of these reported it to be helpful. A mean of 5.1±0.4 yr > elapsed between the onset of symptoms and diagnosis. A subsample > (n=12) contained responses of caregivers of deceased persons > diagnosed with MSA. Death occurred within 8.9±1.1 yr of symptom > onset (range of 1-18 yr). Difficulty in performing various > activities of daily living (ADLs) was assessed, with a score of > " 1 " representing no difficulty and " 5 " representing an inability to > perform the activity. 63% of subjects were unable to drive a car, > giving this activity the highest difficulty score (3.9), and 35% > were unable to walk outside (difficulty score 3.6). Only 2% of > respondents lived alone. 89% reported that the spouse was the > primary caregiver. While only 36% used services requiring a fee > (nurse, aide), 69% indicated that they did use medical equipment. > 20% had quit work or retired in the last month, while 13% had > applied for disability. > Results from this survey provide information on quality of life > issues in the MSA population. Quote Link to comment Share on other sites More sharing options...
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