kellysLayla
Member
Here is the response from the mdausa:
Dear Christi:
Thank you for your recent e-mail communication received through the MDA Website requesting information on ALS, the symptoms of this disease process, and information on MDA programs set up specifiically for those affected by ALS, as related to your troubling symptoms. A direct assessment by a MDA clinic physician would be in your best interest.
Fasciculations are uncommonly the presenting sign/symptom of ALS (some authors say that fasciculations as the presenting sign occurs only about 6% of the time. Much more commonly the presenting signs are weakness and wasting). According to Dr. Valerie Cwik, our MDA Medical Director, "I also don't know that there is a time point after which you don't have to worry any more. I followed one man for "benign fasciculations" several years (3-4) when I was in Canada---then he developed ALS. Fasiculations are normal---we all have them. They are increased by stress, anxiety, lack of sleep, and caffeine intake. They can also be seen in hyperthyroidism."
In the early 1950's Lou Gehrig's widow, Eleanor, who then served as Muscular Dystrophy Association national campaign chairperson, helped the Association launch the greatest private sector effort in American history to fight this baffling disease. Today, MDA is the nation's largest non-governmental sponsor of ALS research and the primary provider of services for those affected. The Association spends millions of dollars on its ALS programs annually and during the past four-and-a-half decades since Eleanor Gehrig's first effort on behalf of MDA, the Association has directed some $130 million of its resources into ALS research and patient care. MDA's current annual commitment to support ALS research is $3.6 million. MDA's support of research directly relating to ALS remains unequaled by any other voluntary health organization. MDA-supported scientists are in the forefront of ALS research pursuing promising leads that are aimed at understanding the causes of this disorder as well as developing treatment for it. MDA-funded researchers have identified two genes that, when defective, cause a familial form of the disorder, and are continuing to work further to understand the protein product involved. Although most cases of ALS are not inherited, understanding the genetic causes may provide essential clues to researchers working to develop an effective treatment for all forms of ALS.
In addition to these unparalleled research efforts, MDA believes that the comfort, well-being and medical management of those affected by ALS are of vital concern. At the present time, MDA sponsors a nationwide network of some 230 clinics -- 30 of which are designated MDA/ALS Centers -- providing diagnostic examinations, as well as annual physical, occupational and respiratory therapy evaluations. Please understand that the effects of a neuromuscular disorder vary from individual to individual. The best person to address case-specific concerns - - including providing a patient with a definitive diagnosis and answers to disease-specific questions - - is a MDA clinic physician. The only requirement to receive an evaluation with an MDA clinic is the written recommendation of a physician, in whose judgement, you may have one of the disorders encompassed by this Association. (A listing of the disorders in MDA's purview can be viewed through the attached Services brochure link). Once the referral is obtained, to learn more about MDA's clinic program or to obtain additional information regarding registering with this Association for services, may we suggest that you contact your local Health Care Service Coordinator. In the event you do not have this information, you may obtain your local office information by referring to the following zip code locator website below:
ZIP CODE LOCATOR:
Once registered, an individual is entitled to quarterly visits at the closest clinic. Additionally, registered patients would receive our monthly ALS Newsletters.
ALS is typified by weakness of the extremities. Problems with speaking and/or swallowing may occur, as well. Many have muscle twitches, cramps and spasms. Pain isn't generally associated with ALS during any stage of the illness. Control of bladder and bowel function remains intact in ALS. Along with an examination, the physician would perform an EMG to determine the health of the body's nerves and muscles. A relatively small percentage of ALS cases are hereditary. The inheritance pattern is autosomal dominant, meaning that the gene flaw is on an autosome and a person needs to inherit a flawed gene from only one parent to cause the disease.
Additional services offered by MDA include support groups, assistance with the purchase of wheelchairs and braces, and periodic educational seminars in many areas.
We're pleased to refer you to the following MDA Web site pages (containing additional ALS information). These sites can be viewed by clicking on the addresses listed below:
GENERAL MD INFORMATION:
SERVICES:
RESEARCH:
ALS SITE:
PREVIOUS ASK THE EXPERTS ;
ALS NEWS : SSDI Recipients With ALS No Longer Have Wait for Medicare
Please know MDA stands ready to assist you to the full extent of it's program while continuing its relentless efforts to conquer ALS through worldwide scientific investigation.
Thank you for reaching out to MDA and we hope this information is helpful to you.
Kindest regards...
Sincerely,
Sallie K. Bitner, MS, RRT
Program Information Coordinator
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
1-800-572-1717
520-529-5454 - Fax
E-Mail:
Web:
P.S. The information contained in this communication is not intended to replace professional advice, whether medical or otherwise. Please consult with your own health care professional for advice concerning the matter discussed herein.
Dear Christi:
Thank you for your recent e-mail communication received through the MDA Website requesting information on ALS, the symptoms of this disease process, and information on MDA programs set up specifiically for those affected by ALS, as related to your troubling symptoms. A direct assessment by a MDA clinic physician would be in your best interest.
Fasciculations are uncommonly the presenting sign/symptom of ALS (some authors say that fasciculations as the presenting sign occurs only about 6% of the time. Much more commonly the presenting signs are weakness and wasting). According to Dr. Valerie Cwik, our MDA Medical Director, "I also don't know that there is a time point after which you don't have to worry any more. I followed one man for "benign fasciculations" several years (3-4) when I was in Canada---then he developed ALS. Fasiculations are normal---we all have them. They are increased by stress, anxiety, lack of sleep, and caffeine intake. They can also be seen in hyperthyroidism."
In the early 1950's Lou Gehrig's widow, Eleanor, who then served as Muscular Dystrophy Association national campaign chairperson, helped the Association launch the greatest private sector effort in American history to fight this baffling disease. Today, MDA is the nation's largest non-governmental sponsor of ALS research and the primary provider of services for those affected. The Association spends millions of dollars on its ALS programs annually and during the past four-and-a-half decades since Eleanor Gehrig's first effort on behalf of MDA, the Association has directed some $130 million of its resources into ALS research and patient care. MDA's current annual commitment to support ALS research is $3.6 million. MDA's support of research directly relating to ALS remains unequaled by any other voluntary health organization. MDA-supported scientists are in the forefront of ALS research pursuing promising leads that are aimed at understanding the causes of this disorder as well as developing treatment for it. MDA-funded researchers have identified two genes that, when defective, cause a familial form of the disorder, and are continuing to work further to understand the protein product involved. Although most cases of ALS are not inherited, understanding the genetic causes may provide essential clues to researchers working to develop an effective treatment for all forms of ALS.
In addition to these unparalleled research efforts, MDA believes that the comfort, well-being and medical management of those affected by ALS are of vital concern. At the present time, MDA sponsors a nationwide network of some 230 clinics -- 30 of which are designated MDA/ALS Centers -- providing diagnostic examinations, as well as annual physical, occupational and respiratory therapy evaluations. Please understand that the effects of a neuromuscular disorder vary from individual to individual. The best person to address case-specific concerns - - including providing a patient with a definitive diagnosis and answers to disease-specific questions - - is a MDA clinic physician. The only requirement to receive an evaluation with an MDA clinic is the written recommendation of a physician, in whose judgement, you may have one of the disorders encompassed by this Association. (A listing of the disorders in MDA's purview can be viewed through the attached Services brochure link). Once the referral is obtained, to learn more about MDA's clinic program or to obtain additional information regarding registering with this Association for services, may we suggest that you contact your local Health Care Service Coordinator. In the event you do not have this information, you may obtain your local office information by referring to the following zip code locator website below:
ZIP CODE LOCATOR:
Once registered, an individual is entitled to quarterly visits at the closest clinic. Additionally, registered patients would receive our monthly ALS Newsletters.
ALS is typified by weakness of the extremities. Problems with speaking and/or swallowing may occur, as well. Many have muscle twitches, cramps and spasms. Pain isn't generally associated with ALS during any stage of the illness. Control of bladder and bowel function remains intact in ALS. Along with an examination, the physician would perform an EMG to determine the health of the body's nerves and muscles. A relatively small percentage of ALS cases are hereditary. The inheritance pattern is autosomal dominant, meaning that the gene flaw is on an autosome and a person needs to inherit a flawed gene from only one parent to cause the disease.
Additional services offered by MDA include support groups, assistance with the purchase of wheelchairs and braces, and periodic educational seminars in many areas.
We're pleased to refer you to the following MDA Web site pages (containing additional ALS information). These sites can be viewed by clicking on the addresses listed below:
GENERAL MD INFORMATION:
SERVICES:
RESEARCH:
ALS SITE:
PREVIOUS ASK THE EXPERTS ;
ALS NEWS : SSDI Recipients With ALS No Longer Have Wait for Medicare
Please know MDA stands ready to assist you to the full extent of it's program while continuing its relentless efforts to conquer ALS through worldwide scientific investigation.
Thank you for reaching out to MDA and we hope this information is helpful to you.
Kindest regards...
Sincerely,
Sallie K. Bitner, MS, RRT
Program Information Coordinator
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
1-800-572-1717
520-529-5454 - Fax
E-Mail:
Web:
P.S. The information contained in this communication is not intended to replace professional advice, whether medical or otherwise. Please consult with your own health care professional for advice concerning the matter discussed herein.