Reply To: new dx ???

Dear Tammy:

I am sorry to hear about your daughter. Please know that she is in our thoughts and prayers.

The Guillain Barre Foundation International recommends that all cases of diagnosed GBS receive either IVIG or Plasmapherises (PP). While the doctors are waiting for your daughter to tumble over and be unable to get back up, her immune system is attacking the myelin sheaths of her nerves. The more damage done to the myelin sheaths, the more residual effects she will experience, possibly for the rest of her life. These residual effects include fatigue in about 85% of all cases, pain, creepy sensations, and weakness. Furthermore, the immune systems attack on the myelin sheaths can and will cause at least some axonal damage to nerves. Most axonal damage is so minor you wouldn’t notice it, but some are left with permanent paralysis.

Your daughter’s doctors are refusing to give treatment for one and only one reason. Both IVIG and PP are very expensive. They cost in the tens of thousands of dollars. Is a life time of fatigue or pain worth 20 to 30,000 dollars? I don’t think so.

Your daughter deserves competent medical attention. I hope you will find new doctors immediately. By immediately, I mean right now. Time is myelin. You can always talk to attorneys later, but the important thing is to make sure your daughter is safe.

Lee