Hello everyone, just wanted to provide update on my progress since my severe attack back in Dec 2010. I started IVIG treatments in March 2011(did have to convince the INS co to approve the treatments.They spoke directly to Dr Druey about this.) This week was my 6 month on the IVIG. I have not had any leaking episodes since Dec 2010. I do experience headaches and sometimes flu like symptoms after the treatment. By the end of the second day after treatment, I am just about back to normal. I have been feeling fine, pretty much have totally recovered from the faciotomies. Just still numbness on parts of my lower legs, but overall doing great. Minor things considering what I went through back in December. Also, my visit to the NIH(first week in March) was a very pleasant visit. All of the testing was very easy to complete, very little if any discomfort during the testing. Dr Druey and his team really make it a great visit. Anyone who can get to the NIH for this testing, that would be great and will help with the research/study of SCLS.

I'm very happy for you that things are going so well. I was disappointed not to be in the NIH testing. Hopefully, my Dr. at Penn will be able to help me. Eileen

Just out of curiosity, do you have to be a US citizen to have the testing? I would be most keen to come over and be part of the trial if at all possible

Hello Windows, You do not need to be a US citizen to have the NIH testing. I am a Swiss citizen and I was tested free of charge on last July. You should ask your GP an appointment with Dr Druey and his team. Best greetings. Claude Pfefferlé

Thanks very much Claude. Best greetings from snowy New Zealand! Sarah