Reply To: Any experience with centers for excellence?

Jay,

I sympathize with your continual tiredness and your desire to get back to normal as quickly as possible.  At this point, there are only two other main lines of treatment available to you:  corticosteroids or immunosuppressants.  It would be best to talk with your doctor about your rate of improvement, continual fatigue, and these treatment alternatives.  If s/he doesn’t address your concerns, then you should seek another opinion.  I did not need the services of any of the centers of excellence, so I cannot speak about them as a patient.  I can tell you from talking with doctors from several of them (Minnesota, Wayne State, Johns Hopkins, UCLA, Boston)  at the Foundation’s symposia, they are knowledgeable and good places to consider.  However, a large medical system in your area might have the expertise you seek, so I would start there and then go to a CoE if you do not get what you need.

Godspeed in your care,
MarkEns