Originally Posted by harley

I have noticed something not right for awhile now, at least a year. due to the fact that my living situation was very stressful, it was easy to blame all the extreme symptomology on that. i ended up in the hosp in june where the anxiety became primary focus. a cat scan was given, but the results read "no acute intracranial abnormality. status post bilateral deep stimularot electrode with no evidence of acute complication." there were also several references to "not parkinson like" or "atypical to parkinson symptomoloty" etc. my gait was referred to as "lurching, not shuffling." and i had developed paratonia, which i am still unsure of the meaning. NONE of this was discussed with me. instead, i was discharged with the advice to leave stressful marriage and got an increase in clonazapan.

the physical problems didnt get better. the anxiety lessened with more clonazapan, so the problems were easier to deal with. my husband left the home so that stress is gone. but, the physical problems are still there, if not worse. with the assumption that these problems were all related to environment, i went on a trip. two things happened. i pondered the possibility that the dbs was screwing up and wondered what would happen if i turned it off. nothing happened. no change at all. i left it off for a good 1/2 hour.. no change in my symptoms. second thing that happened was that my symptoms still had not improved though completely away from my living situation. the offs sudden and intolerable. i began to take xanax along with the clonazapan to cope with them. i went to the conference in altanta and had a horrid off. laying on the floor, unable to move, the parametics were called. i went to hosp...again, stress was the diagnosis. yet, i was not home. i was having fun.

since returning home, i have called my neuro numerous times insisting something had to be done. i had no support or help at home. my balance completely shot, freezing, unable to even speak at all at times. my neuro told me it was time to look into living in an adult family home.

then.. steve came
poifect timing

his help has lessoned the anxiety and his knowledge of what i am dealing with by seeing it first hand has offered me the security i need in knowing that though alot has to do with stress, there is definatly something else going on. he went to my neuro appt with me. i decided possibly an increase in voltage would help. what a nightmare. the left side responded.. but nothing out of the right. nothing except a volt that shot through my LEFT eye and arm. then.. the programmer lost control of his little programming box. it would not obey his command to shut it off. the voltage kept increasing and i sat in an electric chair for at least 5 seconds. finally, it got shut off, and i broke down.

this got their attention. the neurosurgeon looked at the ct given in june, and came up with a different analasis of it than the one given upon my discharge. NOW one of the wires was not in the correct place. NOW they want an mri. NOW they want another ct. NOW they want to do surgery. NOW i want NOTHING MORE TO DO WITH THIS MEDICAL TEAM.

admitedly, i will acknowledge that stress and anxiety does play a huge roll here. i know that just by how much better i am doin with steve here. at the HOPE conference, there were times i walked, talked, and felt completely normal. BUT THERE IS STILL SOMETHING WRONG. my offs are sudden, and very hard.
Steve and I are putting together a plan. I want to go to Cleveland clinic.

Need advice.. should I have mri and ct done here? It is scheduled for the 10th. I am thinking this may get me into Cleveland quicker.