No Diagnosis Yet for Movement Disorder
 

My 28 year old brother lives with us and he has been experiencing parkinson like symptoms for almost 2 years now. His symptoms started suddenly when he woke up one morning. Over the next 4 months he gradually declined to the point that he could no longer stand unassisted. He has pretty much stayed at that level of functioning for the last year and a half. He was treated by several neurologists, psychologists and neurosurgeons. No one can figure out his symptoms. He has tremors in his face, neck, arms and legs, he also has stuttering and choking. He is able to walk about 50 feet with a walker, when he tries to get up without the walker or take a few steps he is unable, he looses his balance right away. I must add he is also dx'd with Antiphospolipid Anitibody Syndrome.

He has been tested for tons of things, from the very basic to the absurdly weird. One doctor felt conversion disorder but neuropsych testing and several psych consults dimiss this as the cause. He is now enrolled in a study for Rapid Onset Dystonia Parkinsonism. We will see.

He is very frustrated at this point and we are looking for support groups for young people or suggestions no matter how weird they may seem. We are working with a doctor at a large university, he is very open to anything we mention to him.

Thank you very much for any suggestions!

Shell

Wish I could help
 

Wish I could offer some help for you and your brother.
My neuro psych counselor thinks my myoclonic jerks are all in my head. Wants to try to see if we can get rid of them with counseling. Never mind, that I have had this condition for 13 yrs until I had surgery to repair C-spine disks '05. Got better and now since I had a horrible pop in my neck 2 times a few months ago,and 1 last week, it has started back and I have lots of neck pain. Whole thing starting over again.
Well guess I will have to see if she can get it out of my head. Meanwhile while I get counseled my legs are falling out from under me (as before), and who knows what is next. I stopped my appointments until I can get my head back on straight. Actually have become more confused due to rapidly changing discussions each week.
I have been through this for so long, nearly 67, and right back where I started! Don't blame counselor though, I was a raving manic after a visit yesterday morning to a doc that did not even know what myoclonic jerks are and dismissed me totally. Of course he saw some instability in C-2 to C-3, just above my fusion. Oh Jimminie crickets, deliver me from docs!

I share your distress and hope you soon find answers . Hugs, an arm jerking, head spinning frog. LOL

restless legs
 

i was getting restless limbs,arms and legs, cured them by taking calcium/magnesium supplements, all went away!!!!!!!!

me too.
 

I too have myoclonus which got much better after small bowel obstruction surgery, but after 6 months started to get worse. I think the dr.s must have given me something during my hospital stay that affected it. I just don't know what.