Could my crippling paralysis actually be dural ectasia?

Question

So I have episodic paralysis. It happens semi-reliably, every three months or so, and lasts for two days at a time. During these two days I can't stand up without experiencing extreme pain.

It starts with tension knots at the nape of my neck. Within a few hours, the area in the middle of my sternum just behind my diaphragm starts hurting immensely. The symptoms go away completely when I lay down.

I've been to a radiologist for a pelvic ultrasound, a neurologist, a metbolyc specialist, my pediatrician, an orthopedist, have had an open MRI and have had six different x-ray sessions as well as spent two nights in the ER to no avail. Any ideas? I just want my life to continue.

Answer 1

It doesn't sound like DE to me, for a few reasons.  First I've never known anyone to have a regular time schedule of having problems or for them to keep just from standing for 2 days.  Second it doesn't usually move that methodicly down the spine.  The fact that laying down takes care of the problem however does often help at least in early stages, but not sure completely go away,

DE typically is a pooling of the fluid in the lower spinal area, although it can cause bulging in other areas.  Those I know may have headaches much like migraines and the legs are usually very weak and not sure they will hold you.  The pain is usually in the back most of the time although will lessen and again get worse.

The only way to get a DX is with an MRI, some will even suggest a standing MRI.  You may need to ask the radiologist if they considered it as it is very uncommon in the general population.