Dysferlinopathy should be suspected in muscular dystrophy patients with presentation in their late teens, especially if posterior distal lower limb involvement can be demonstrated early on. This may be asymptomatic, or manifest as early inability to stand on the toes. The clinical spectrum of dysferlinopathy encompasses different modes of presentation in terms of the pattern of muscle involvement. Shared features appear to be a tendency for the age at onset to be most commonly in the late teens or early twenties and an elevated creatine kinase concentration (often >100 times normal in the early stages). gressive, but rarely rapidly so. Diagnosis is confirmed by protein analysis and mutation detection. The membrane stabilizing effect of Ayurvedic TMP procedure along with administration of Mamsagni and Sukumar Guggul Rasayana may be beneficial in the long term management of Dysferlinopathy.
No treatment is at present known in any system of medicine which has any definite influence upon muscular dystrophy. The absence of specific treatment for muscular dystrophy makes it all the more important to consider complementary and alternative approaches of treatment. In India, the Dystrophy patients always seek Ayurvedic help in the hope for some relief. The Ayurvedic treatment involving Rasayana group of herbo-mineral or gold based medicine, yogic support and specific Panch karma procedures have shown definite protective influence and longer survival upon muscular dystrophies. Both dystrophin and dysferlin are attached to the sarcolemma and deficiency of both proteins cause sarcolemmal defects; therefore, any membrane-stabilizing effect may be beneficial in the long term management of Limb girdle / Myoshi myopathy. Furthermore, there is marked inflammation in muscle biopsies of many Dysferlinopathy patients. Therefore, the anti-inflammatory effect of Sukumar Guggal Rasayana may improve muscle function in Limb girdle patients.
The AMDS India have started a care through research program of Ayurvedic Panch Karma & Yoga therapies on Neuro-Muscular Disease in 2001. Over 100 NMD patients from India and abroad were treated and monitored at Central Medical Institute Bhilai India during five year of follow up. So far, we have treated Duchenne type, Bucker type and Limb-Girdle type of patients with very promising results such as (i) weight loss (ii) Decrease in blood CK level (iii) Relief in Pain and Stress (iv) Decrease in walking difficulty (v) Further check on muscle wasting and contractures. These results suggest that there is check on further muscle destruction. The Complementary Ayurvedic Treatment: focuses on Tridoshic balancing and empowerment of mamsa dhatus (muscle fibers). The primary intention is on treating or delaying symptoms, enhancing physical mobility and preventing cardiac and respiratory complications. Get asses more information in the google link below:
http://docs.google.com/Doc?id=ddwvgcng_75kx2bkd9&invite=gswp3kc
Although in our short trial, no therapeutic breakthrough has been achieved and curative treatment modalities are not yet applicable, life expectancy and quality of life of dysferlinopathy patients could be remarkably improved by establishing a CAM therapy, capable of delaying the dystrophic process and improving muscle strength and function.
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About the Author
Practicing Ayurveda Acharya since 1981; Double graduated in Basic Sciences, Ayurveda with Modern Medicine and Surgery both from Sagar & Ravi Shanker Universities. A teacher, researcher, an author of three scientific books on Ayurveda & Yoga therapy; On editorial board of several journals including Global Ayurveda & Light on Ayurveda Journal in the US. Currently head of Panch Karma Clinic on Neuro-Muscular Diseases in Bhilai. Profile: http://openlibrary.org/a/OL4097418A
