Any Research updates?

I was diagnosed with Primary Lateral Sclerosis in 1992 and it was confirmed at the Mayo Clinic in 2000.  Most doctors here can tell me nothing about any research that is being done or the progress of such.  Has anyone out there heard anything?

[dr_simran]

Hello Dear,
Primary lateral sclerosis (PLS) is a rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die, causing weakness in the muscles they control. Onset of PLS usually occurs after age 50. Symptoms may include difficulty with balance, weakness and stiffness in the legs, and clumsiness. Other symptoms may include spasticity (sudden, involuntary muscle spasms) in the hands, feet, or legs; foot dragging, and speech problems due to involvement of the facial muscles. The disorder usually begins in the legs, but it may also start in the tongue or the hands. The disease-which scientists believe is not hereditary-progresses gradually over a number of years, or even decades. In PLS, there is no evidence of the degeneration of spinal motor neurons or muscle wasting (amyotrophy) that occurs in amyotrophic lateral sclerosis or ALS (Lou Gehrig's disease), which it resembles. Diagnosis of PLS is often delayed because it is mistaken for ALS.

Treatment for individuals with PLS is symptomatic. Baclofen and tizanidine may reduce spasticity. Quinine or phenytoin may decrease cramps. Physical therapy often helps prevent joint immobility. Speech therapy may be useful for those with involvement of the facial muscles.

PLS is not fatal.  There is no cure, and the progression of symptoms varies.  Some people may retain the ability to walk without assistance, but others eventually require wheelchairs, canes, or other assistive devices
The NINDS conducts a broad range of research on neuromuscular disorders such as PLS. This research is aimed at developing techniques to diagnose, treat, prevent, and ultimately cure these devastating diseases.
Hope this helps you
Refer http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm
Best

[u089892]

Thank you for your reply but the information you gave me, I was well aware of since I have don't alot of research myself and have gotten information from the Mayo Clinic.  

I was just wondering if there was anything NEW.

[u089892]

As you may have guessed---this is a very frustrating disease.  My family doctors don't know what this is and I end up having to educate them.  The Neurologist I see, admits that he knows very little about this and has run tests on my nerve conductivity and says he understands this issue.  He does not know how to help me except with the Zanaflex and Neurotin for the nerve pain.  

I was on so much medication that it affected my life more than the PLS.  I took myself off of it and feel human again.  I would rather have the spacity than be a zombe.