Hello, cn-ga,
As I am sure you already know, the neck extensor muscles are
responsible for holding the head erect, and the chin up an away from
the neck. A drooping head indicates a weakness in the neck extensor
(or paraspinal) muscles in the back of the cervical spine. Myopathy,
in reference to these muscles, speaks to a general weakness which can
be caused by many different factors.
Since your doctor seemed to give you little information, I am
providing a general overview of myopathy, and will then get to the
clinical referrals. (I assume that you already read the technical
articles referenced in answer to your last question. However, here is
a less clinical overview)
Overview of Myopathy
“Diseases that affect skeletal muscle - muscles that are connected
to bones, like the biceps in the upper arm and quadriceps in the thigh
- are often referred to as "myopathies." Myopathies can be caused by
several different factors, including inherited genetic defects (e.g.,
the muscular dystrophies), endocrine or glandular defects,
inflammation (e.g., polymyositis), or biochemical or metabolic
abnormalities.”
“Almost all of the various myopathies lead to a weakening and
atrophy of the skeletal muscles, especially the muscles closest to the
center of the body, the proximal muscles, such as the those in the
thigh and shoulder. Muscles further from the center of the body, the
distal muscles, such as those in our hands and feet, are generally
less affected by the debilitating consequences of myopathy.” From
“Myopathies:Overview.” the Neurology Channel at
http://www.neurologychannel.com/myopathies/
Symptoms:
In some cases, patients have no symptoms.
“Some individuals report that their myopathy emerges during
exercise. In some cases, the symptoms diminish as exercise increases.
Depending upon the type of myopathy, one muscle group may be more
affected than another. In some instances, individuals have myopathy
but report no symptoms.” From NINDS Myopathy Information Page at
http://www.ninds.nih.gov/health_and_medical/disorders/myopathy.htm
For a more general overview of various symptoms, please read,
“Myopathis:Symptoms.” The Neurology Channel at
http://www.neurologychannel.com/myopathies/symptoms.shtml
It can be noted that a search for “idiopathic myopathy” on the
website of the National Institute of Arthritis and Muskuloskeletal
Skin Diseases returned no results, lending some credence to your
feeling that it is somewhat of a catch-all term!
http://www.neurologychannel.com/myopathies/symptoms.shtml
However, the Neuromuscular Disease Center website at
http://www.neuro.wustl.edu/neuromuscular/index.html has a
comprehensive overview of the myopathies.
***A rather severe case of posterior neck weakness can be seen on
the following page at
http://www.neuro.wustl.edu/neuromuscular/musdist/postneck.html ***
By clicking on related links, such as “Posterior Cervical
Myopathies”, or “Paraspinous weakness,” you can find some clinical
jargon which may or may not interest you!
Diagnosis and Treatment:
** “Many times a myopathy is simply labeled "nonspecific muscle
myopathy" because, unfortunately, there are very few specific
treatments available,** the important exceptions being Duchenne and
Becker's muscular dystrophy. **Often, a specific diagnosis is not
really necessary, unless a patient wants to know for whatever reason
exactly what is happening.** Or, they may want to know if their
particular myopathy is genetic and, if so, the chances that their
children will develop it. It is also important to know exactly what
myopathy a person has if they are at all interested in participating
in clinical treatment trials.”
“There is a nationwide network of Muscular Dystrophy Association
(MDA) clinics that specialize in diagnosing and treating myopathies.
Anybody who suspects that they or their child may have a myopathy
should visit one of these centers or find a neuromuscular specialist
is familiar with all the up-to-date diagnostic tests and treatments.”
“Generally, diagnosis involves several outpatient tests done to
determine which type of myopathy a person has. Sometimes it is
necessary to wait until the disease progresses to a point at which the
exact syndrome can be identified.” Read Myopathies: Diagnosis. The
Neurology Channel at
http://www.neurologychannel.com/myopathies/diagnosis.shtml (Read more
about Clinical, Neurological and Laboratory Evaluation procedures on
this page)
“Treatment for myopathy is limited to slowing progression of the
disease once it has onset. Unfortunately, there is no cure available
yet for muscular disease. Current available treatment focuses on the
symptoms. Drugs and physical therapy are both used to alleviate
muscular discomfort. Researchers are seeking gene therapy treatments
for some of the disorders. Gene therapy involves inserting normal DNA
into a person's cells to correct for the defect that is causing the
disease.” Read Myopathies: Overview. The Neurology Channel at
http://www.neurologychannel.com/myopathies/index.shtml
More on treatment can be found at
http://www.neurologychannel.com/myopathies/treatment.shtml
Now, for the answer to your original question!
Treatment Centers and Clinics
The Muscular Dystrophy Association…”is a leading advocate for finding
a cure for all of the myopathies, not just the muscular dystrophies.
http://www.neurologychannel.com/myopathies/symptoms.shtml#causes
*** A list of clinics (by State) endorsed by the Muscular Dystrophy
Association can be found on the MDA clinics and services page at
http://www.mdausa.org/clinics/alsserv.html Although the clinics are
devoted to researching and treating Muscular Dystrophies and ALS, they
are also the best place to start for any myopathy, as mentioned
above.***
Stanford Hospital
“The Stanford Neuromuscular Program offers testing, therapy, and
clinical trials for patients with neuromuscular diseases such as
muscular dystrophy and ALS (amyotrophic lateral sclerosis, commonly
known as Lou Gehrig's disease). Our physicians treat patients with
disorders of the muscles, neuromuscular junctions, and peripheral
nerves in our weekly outpatient Neuromuscular Clinic and Muscular
Dystrophy Association (MDA)/ALS Clinic.”
For address and contact information, go to
http://www.stanfordhospital.com/clinicsmedServices/COE/neuro/neuromusclardisorders.html
University of Pennsylvania and Pennsylvania Hospital
“The University of Pennsylvania's department of neurology at the
University of Pennsylvania Hospital and Pennsylvania Hospital offers
diagnostic and management services for all neuromuscular disorders
including myopathies….”
Contact and address information can be found at
http://www.wfnals.org/Clinics/uspa.htm
University of Virginia Health System – Dept. of Neurology
“The Neuromuscular Disease Program is devoted to the investigation
and treatment of peripheral neuropathies, neuromuscular junction
disorders, myopathies, and motor neuron diseases. Activities within
the program include the following:
Neuromuscular clinics
Inpatient consultation services
Electrodiagnostic/electromyographic evaluations
A fellowship program
Clinical research/treatment trials
Contact and address information may be found at
http://hsc.virginia.edu/medicine/clinical/neurology/facilities/programs.html
*** For the U.S. News and World Report ranking of the 50 best
hospitals in the United States for Neurology, visit their site at
http://www.usnews.com/usnews/nycu/health/hosptl/rankings/specihqneur.htm
A possible route you may consider is working with a Physiatrist.
(However, I would consult with your doctor about whether this should
be the first route of choice, or a longer term rehabilitation program
after seeing a specialist in Myopathic disorders)
“A physiatrist (fizz ee at' trist) is a physician specializing in
physical medicine and rehabilitation. Physiatrists treat a wide range
of problems from sore shoulders to spinal cord injuries. They see
patients in all age groups and treat problems that touch upon all the
major systems in the body. These specialists focus on restoring
function to people.”
“To become a physiatrist, individuals must successfully complete
four years of graduate medical education and four additional years of
postdoctoral residency training. Residency training includes one year
spent developing fundamental clinical skills and three additional
years of training in the full scope of the specialty.”
http://www.aapmr.org/consumers/public/what.htm
For a list of Physiatrist’s by state, go to
http://www.aapmr.org/find.html. I cannot vouch for any of these….it
is merely a suggestion.
I hope that you have found some good information to provide you not
only with a better understanding of myopathy in general, myopathy
concerning the neck-extensor muscles in particular, but also some
excellent hospitals and clinics to consider visiting for further
diagnosis and treatment.
Let me know if I can help you in any further way.
umiat-ga
Google Search Strategy
US clinics +myopathy
myopathy
+best +neuromuscular +clinics |
Clarification of Answer by
umiat-ga
on
13 Nov 2002 11:15 PST
Hello again, cn-ga!
I understand your confusion over myopathies coupled with searches
for clinics which deal with neuroloy, especially since you say your
condition has no neurological component. With all of the jargon, you
may have overlooked my reference to the top clinics listed by the
Muscular Dystrophy Association which deal with all types of
myopathies. As noted:
“There is a nationwide network of Muscular Dystrophy Association
(MDA) clinics that
****specialize in diagnosing and treating myopathies.***
**Anybody who suspects that they or their child may have a myopathy
should visit one of these centers or find a neuromuscular specialist
is familiar with all the up-to-date diagnostic tests and
treatments.”**
“Generally, diagnosis involves several outpatient tests done to
determine which type of myopathy a person has. Sometimes it is
necessary to wait until the disease progresses to a point at which the
exact syndrome can be identified.”
Again, I point you to the list of treatment facilities listed by the
Muscular Dystrophy Assocation (which again, deal in all types of
myopathies). I understand you do not have Muscular Dystrophy!!!
"The Muscular Dystrophy Association…”is a leading advocate for
finding
a cure for all of the myopathies, not just the muscular dystrophies."
*** A list of clinics (by State) endorsed by the Muscular Dystrophy
Association can be found on the MDA clinics and services page at
http://www.mdausa.org/clinics/alsserv.html Although the clinics are
devoted to researching and treating Muscular Dystrophies and ALS, they
are also the best place to start for any myopathy, as mentioned
above.***
Now, I cannot tell you which is the best doctor or the best
diagnostic facility, because that information is simply not available
online. And I would imagine it is also a matter of personal opinion.
However, I do imagine that these clinics have been determined to be
the best in diagnosing myopathies, or they would not be mentioned as
such by the MDA.
Since I am assuming you live in California by your reference to UCSF,
the listing for California facilities is as follows:
CALIFORNIA
FORBES NORRIS MDA/ALS RESEARCH CENTER
(415) 923-3604
(415) 923-6567 FAX
E-mail: rmiller@cooper.cpmc.org
Robert G. Miller, M.D.
California Pacific Medical Center
2324 Sacramento Street, Suite 150
San Francisco, CA 94115
JERRY LEWIS MDA/ALS CLINICAL AND RESEARCH CENTER
(213) 743-1611
(213) 743-1617 FAX
E-mail: not available
W. King Engel, M.D.
University of Southern California
School of Medicine
637 South Lucas Avenue
Los Angeles, CA 90017
MDA/ALS CENTER AT THE UNIVERSITY OF CALIFORNIA, IRVINE
Tahseen Mozaffar, M.D. Codirector (714) 456-7002
John Weiss, M.D. Codirector (949) 824-1209
Department of Neurology E-mail: mozafar@uci.edu
Gottschalk Medical Plaza E-mail: not available for Dr. Weiss
1 Medical Plaza Drive
Irvine, CA 92697
MDA/ALS CENTER AT UCLA
(310) 825-2937
(310) 825-3995 FAX
E-mail: mcgraves@ucla.edu
Michael C. Graves, M.D.
UCLA Neurological Services, Suite B200
300 UCLA Medical Plaza
Los Angeles, CA 90024-6975
If my assumption about where you live is wrong, simply go to the list
of MDA facilities, and click on your home state.
I hope this clears up some of the confusion!
And thank you very much for your kind rating, patience, and generous
tip. I can speak for all the researchers by saying that it is people
like you that make researching worth our while. When a client can
write a kind comment even if they feel the answer is not quite up to
expectations, it stands out among some of the "less kind" comments we
often encounter.
umiat-ga
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