Hi All- Just joined today and am desperately searching for a connection for both of us. So my son Drew
got a rare nuerological disorder called Transverse Myelitis(TM)after complication with vaccines and ear infection when he was 15 month old. So TM caused his spinal cord to swell and he was paralyzed from the waist down. As he has made some recovery over the past 4 years, he still have nuerogenic bowel (daily suppository and clean outs to have BM) and bladder (has to be cathed every 4 hours). He has regained some mobility with use of afo braces and crutches and then wheelchair as he fatigues easily and is considered an incomplete spinal cord injury. As he has had a few relapses, they found he has mild chiari malformation. We just went to our first TM camp this summer and there were many with TM or ADEM who had a chiari malformation. He has also started Autonomic Dysreflexia from location of his spinal cord injury from TM(his bladder or bowel or other offender raises his Blood pressure to dangerous levels, and if he's not cathed right away or offender figured out to lower BP, he could stroke or worse- Luckily he will be 6 next week, has a fighter funny attitude and looks at people like "where's your equipment?"
I have also been having my share of health issues the past two years starting with huge joint pains,
wrist ligaments tearing without injury, history of headaches, early osteoporosis (even though clean healthy eater and exerciser whole life), ITP (blood disorder) and history of multiple knee surgeries since I was 14 (both ACL reconstructs). So now with a rhuematologist saying I have Ehlers Danlos Syndrome (collegen difficiency) and will see a geneticist in January. Am also wondering if I have a Chiari since always history or headache, CT scans for head, etc. but never and MRI.
So my main question is how many of you have Ehlers Danlos along with a Chiari and also a rare nuerological disorder such as Transverse Myelitis, ADEM or encephalitis or Autonomic dysreflexia
Any stories you have would be very helpful as I've found on the TM pages most of the patients/
caretakers are the most knowledgeable and best listeners than most of the doctors!
My best,
Liz