Index
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You can read about the survey results at this link Myopathy Survey Results
I slogged through what seemed like a million bits of information and tried to organize it
into a legible format. There were several very important items that the survey
clearly highlighted,
one of them being the significant impact of pain in the lives of patients with myopathies.
In the near future I am going to have a link that will deal with my own personal
experiences.
The Links Below Are For Your Convenience
They are in NO way a comprehensive collection of what is available, simply a short
list to get you started.
PubMed
The links below are to articles in PubMed, a fabulous site that also allows you to perform
your very own search. An online tutorial on how to use PubMed can be
found at the following site: Follow this link To learn more about PubMed
Once you've selected one of the articles below to read, and have gone to that page,
all you have to do is select the option PubMed in the gray square on the bar across the
top....this will take you to the PubMed search site Don't forget to search other key
words, such as MINICORE, CONGENITAL FIBER TYPE DISPROPORTION, CONGENITAL MYOPATHIES and
you will learn many other terms, as well.. Also, bear in mind that some of
these articles are VERY old and the information may be outdated and even
contradictory. For example, multicore myopathy was initially thought to be
benign and non-progressive. Recent literature indicates otherwise. So read
carefully. Follow leads. Go to "See Related Articles", and read some
more. You will find that multicore myopathy has many faces, and, I suspect,
many different names!!
Note also that these are not full-text articles, some articles do have abstracts,
however, that tell you a bit more about the article itself and other articles don't
have abstracts. If you find articles you're interested in and want the full-text,
copy down ALL the information and go to your public library and request an interlibrary
loan. There may be ILLO charges, so check with the librarian.
Muscles
Learn all you can about muscles!
Malignant Hyperthermia
It is still uncertain whether multicore myopathy predisposes you to Malignant Hyperthermia
or not, so do some research in this area, as well. For further information,
you might take a look at this terrific site on Malignant
Hyperthermia.
Cardiomyopathy
Facts About Cardiomyopathy
An excellent site that explains cardiomyopathy clearly and concisely.
Bethlem Myopathy - Meredith's
daughter, Julie, has been diagnosed with Bethlem Myopathy, and, their site can be accessed
at this url http://members.tripod.com/msweiner-ivil/julie/
Congenital Myopathy Site Debbie's son, Clay,
has been diagnosed with a congenital myopathy and you can access their site at this
url http://webpages.charter.net/mccawthon/types.htm
Centronuclear and Myotubular Myopathy - The
Information Point is designed by Toni and you can access this
site at this url http://www.centronuclear.org.uk/
The Newsletters from the Centronuclear
and Myotubular Myopathy Site can be accessed on the Information Point
site at this url http://www.centronuclear.org.uk/cnmnewsletters2006.htm
Both Toni and her father, Mike, have been
diagnosed with Centronuclear Myopathy. You can read more about their journey at this
url http://www.centronuclear.org.uk/cnmtonimike2006.htm
Multicore Myopathy Articles
A follow-up study of congenital non-progressive myopathies."CNM were not necessarily benign in their prognosis as previously thought, but sometimes showed progressive deterioration ....
PAIN
Assessment of pain and health-related quality of life in slowly progressive
neuromuscular disease.
OMIM Entry (Genetics) Genetics from OMIM
"Welcome to OMIM(TM), Online Mendelian Inheritance in Man. This database is a catalog
of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and
colleagues at Johns Hopkins University and elsewhere. More information on OMIM is
available...."
This is another terrific site! A search on "multicore" yields five
articles, but, links to a wealth of other articles to read. For example, this
article 255320
MYOPATHY, CONGENITAL MULTICORE, WITH EXTERNAL OPHTHALMOPLEGIA provides a clue that
you should also research OPTHALMOPLEGIA. In the text, under
the section 'Clinical Synopsis', it also suggests a possible connection with
Multicore Myopathy and Malignant Hyperthermia.
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