Hi Gretel,

Welcome to Neurotalk. I don't know much about your specific condition but you might want to check out our spinal forum and someone there might be able to help. Or some of the rare disease subforums

Here are the links

http://neurotalk.psychcentral.com/fo...aysprune=&f=22

http://neurotalk.psychcentral.com/fo...aysprune=&f=87

Please let us know if you need any other help.