Intrathecal Pump. IVIG. or Plasmapheresis

Hi Everyone,

I am new to this so please forgive me if I am posting this in the wrong section.I am 19 and have had EM since I was 12. It was out of control and I was eventually able to leave the hospital after learning how to walk again. They would but 10% capsacian cream on my feet to basically burn the nerves. I would be inpatient for pain control for 4-5 days. The capsacian cream allowed me to go to the first two years without any assistance except every 6 months I would have to do the whole thing over agian.
I am at the point where there aren’t much options left. But my team of doctors think its time for the pump. I also found some info on using IVIG for EM because some is to be believed it is an autommune disorder. And was told some people do plasmapheresis and it helps with flares and flow of blood.

-I am wondering if any of you have a intrathecal pain pump?If so do you think it is worth it?

  • What kind of medication do you have in the pump?
  • Any complications with the pain pump.
  • How has it changed the quality of your life?

Does anyone recieve IVIG and plasmapheresis?
I know some people that have gotten benefit.

If anyone has or tried anything of the above please leave a cooment.
Thanks so much

Hi. I have a friend that is doing IVIG and is getting good results
I have also been thinking to do this . I wish you luck