Akasha, You may already do this, but it would be interesting to your Drs. probably if you kept a calendar marked with the start and finish of your cycle and how you are doing on each day.
My Dr. also has always said that there is somthing else going on with me besides my DRD. I found out in Nov that I have a Chiari 1 Malformation. I had a brain decompression surgery in February. I can't say that it help my walking tremendously but it has eased my neck and shoulder pain for the most part. It could be up to two years before I know the full affects of surgery so I am still hopfull and back in Physical Therapy to try to help my recovery along.
It is still possible that I have a tethered spinal cord that is hard to detect on MRI's. But hopefully PT will help and I won't have to have yet another surgery.
My Drs is also looking into trying some botox on my left leg which most affected by the DRD. Hoping to calm down my stiff muscles to help me to walk more normally. So far my insurance is not cooperating. We will see.
DRD is much easier than brain and spinal cord surgery. With DRD all I have to do is take a few pills each day and do PT. Definately easier. lol
Too bad the researchers don't check out these bulletin boards. They could learn a thing or two about what is really happening with Dystonia. Seems like the way research is done now is like building a house for someone with special needs and not asking them what they need the house to be like.
Beverley
