New here and dealing with an undiagnosed movement disorder
 

Hello everyone, I'm Rachel, I've been dealing with an interesting and difficult movement disorder for about 8 months now, I am seeing a neurologist and documenting everything that I can so that hopefully we can figure out what it is.


To start at the very beginning, in 2003 I was put on Zoloft for some anxiety, on about day 5 or 6 I was taken to the ER with what they diagnosed as a dystonic reaction, I was wringing my hands and my neck was twisting and turning every which way, all of this was involuntary.


Fast forward to last year in July, I was eating dinner with my family and my throat began to swell, which has happened before (no food allergies that I know of), because of this I took one 25mg Benadryl, within a short time of taking the Benadryl I started to have a strange electric "buzzing" feeling all over, I also felt the need to stretch out, and when I did it would make the buzzing feeling go away for about a second or two, after that stopped my back started to arch involuntarily, after about an hour it slowed to a stop.


Since that night in July I have had episodes of and on, mostly it's always in my neck, but it has since involved other parts of my body such as my arms and shoulders, legs, feet and hands, also in my abdomen. I had episodes from July to September, then I had about a 4 month break of nothing, then they started up again and have gotten worse.


I've been to the ER twice for particularly bad episodes, one last year and one this past Monday where I was unable to respond though I was aware and conscious, they have given me Diazepam which has seemed to help slow things down. I've had tests done (blood, head CT) that have been normal.


My episodes consist of twisting movements, muscles contracting and tensing up, some jerking, contorting and tremors, they are sometimes bilateral and always very painful while they are happening and I am always very sore for a day or a few days after, depending on how bad they were. I do have video of several of them or my Neurologist, she has yet to see one in person, the only people to see them have been my husband, a few people from our church, the ER and ambulance workers and my Chiropractor (the episode Monday happened at my Chiropractors office). So far what has been proposed as possibilities are Conversion Disorder, Tic Disorder and Paroxysmal Nonkinesigenic Dyskinesia


I am not sure if the episode in 2003 is related but I do wonder if it is, I also don't know if the Benadryl was in fact what set off that first reaction in July or not, though I do think it did (my Neurologist doesn't seem to think much of either incident or that they are connected to this).


I should also maybe mention that I have been under what I can best describe as a brain fog, I have trouble thinking, concentrating and remembering things, my Neurologist sent to me to see a Neuropsychologist which I did, and today in fact had my follow up with her, I was diagnosed with Asperger's Syndrome and Executive Function Disorder, something that is still sinking in honestly.


So anyway thank you for reading, I look forward to talking to some people who might understand what I am dealing with, I would be more then happy to answer any questions anyone may have :)