Re: Guillain-Barre & Myasthenia Gravis

Posted By Tess on October 16, 1997 at 23:38:27:

In Reply to: Guillain-Barre & Myasthenia Gravis posted by B. Sheridan on September 30, 1997 at 17:59:44:







: During recent research on the Guillain-Barre syndrome, I have found conflicting information concerning the recovery potential.  Some research shows that 90-95% of patients fully recover...others say that only 50% may fully recover.  QUESTION:  Do you have any reliable information on the recovery potential for GBS patients?
I am also researching Mysasthenia Gravis.  QUESTION #2:  Have there been any recent developments on the etiology or treatment of myasthenia gravis?
Finally,  the last question:  I am a C5-6 quadriplegic.  Recently I heard Dr. Dean Edell say on his radio program that there has been a group of quads selected to undergo experimental fetal tissue transplants (spinal cord cells). Can you give me any "detailled" information on this stufy--or any other information concerning this?
Thank you for your time,
Brian Sheridan
Occupational Therapy Student
Saginaw Valley State University
Brian,
What type of treatments are you referring to?
Mg is currently treated with anticholinesterates (Mestinon, Prostigmin), as well as with immonosuppresants (Prednisone, Imuran, Cyclosporin, Cytoxan).  IVIG (non FDA approved) and Plasmapherisis are also used most commonly pre-op or when signs of imminent crisis or instability are present.  Some physicians use the latter treatments more often, however.  Thymectomy is still often done as a treatment even in cases where thymoma or thymic hyperplasia are not suspected, due to the unexplained incidence of remission odds.
Research shows a couple of treatments on the horizon, although nothing is labelled for MG use at this time.  One particular asthma medication is about to undergo clinical trials, and there is, or was, an IVIG clinical trial going on until the drug company involved pulled product promised for use.
There are two patients on my International support group, who are having wonderful results from homepopathic treatments.  This is extremely surprising, and a leading MG neurologist has promised to look onto doing a detailed study with the homeopath there.  An application has been made to the Canadian provinical governement for approval on that.
Research continues around the world, and recently thre has been remarkable progress towards an innoculation to prevent MG.  Laboratory testing on EAMG (experimental animal MG, the ;laboratory standard for research purposes) will hopefully begin within the year.  The advances in understanding the specific chemical reactions and blockages involved in MG continue.  
Wonderfdul advancements have been made onm that front both in California and England.  It is now believed that MG is likely a GROUP of diseases, since different sites on the muscle endplate receptor are involved in diffrent cases.  In this vein, a new site has been located, and has led to a laboratory test which shows the presence of MG for those patients who have previously tested "seronegative", read: non-positive for the three previously known antibodies.  It is hopeful that this test will end up being available for clinical use.  Of course, this is not the case for Congenital Myasthenia Gravis, also known as Congenital Myasthenic syndrome, as it is basically a cousin syndrome with symptoms and SOME of the treatment mimicking MG.  They are actually very different diseases.
Let me know what specific treatments  you are interested in, and I will see if I can help.  Hopefully  I haven't said too much already!
Tess




My MG is not a sportscar!