MG-Late Stages

[Ted-Harigan]

    
      Re: MG-Late Stages
    


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Posted by CCF Neurology MD on November 06, 1997 at 02:05:35:

In Reply to: MG-Late Stages posted by Ted Harrigan on October 22, 1997 at 16:21:48:

: My Mother is 70 years old lives in a small rural community where Doctors
  are not familar with MG. She was diagnosed with MG at Mayo's but the drugs
  given to her actually accelerated the muscle weakness. So she is not taking
  any drugs for this condition at this time.  Mentally she is alert but physically
  her condition is becoming critical.  She can not move legs or arms and
  can not hold her head up. She has little strength in her hands. Her
  speech is becoming slurred and this week her
  breathing is becoming more difficult. From what I've read this would appear
  to be the crisis stage.
  I've read about plasma exchange and intravenous immune globulin (IVIG) treatment
  but understand it is short term improvement.  She has explicit instructions
  that she does not want any treatment which is prolonging her current condition.  
  We are trying to determine what we can do to provide more comfort yet not
  go against her wishes of not prolonging her mysery.  We are also trying to
  determine how much longer we should expect this to continue. Our efforts
  to find out information on this has been extremely frustrating and
  unfortunately from what I now know too little too late. Please advise
  of the estimated duration we could anticipate and what treatment might provide
  comfort.  Thank you very Much
==============================================================================
Dear Ted:
Advanced or severe generalized MG (which your mother unfortunately seems to have) can, at times, be very difficult to control. On the other hand, there are several patients with such disease who may dramatically respond to both short-term measures (plasmapheresis/IVIg) and long term treatment (immunosuppressants, thymectomy).
I personally feel that it is really important for patients like your mother NOT TO GIVE UP. You might agree and may even succeed in persuading her to receive aggressive treatment.
Although plasmapheresis and IVIg are indeed temporary in their effect, they have a really important role as a "bridge" till the beneficial effects of prednisone and other immunosuppressants are apparent.
Intubation, if indicated in a crisis situation, I believe, should not be refused. It is usually only a temporary measure.
If there is anything that can make your mother feel more comfortable, it is improved strength of breathing and swallowing. This can be acheived only if appropriate aggressive therapy is not refused.
I can understand the frustration and anguish your mother, you, and the rest of your family are going through. It is important not to lose hope.