I'm new this forum, so please bear with me. I will try to stay brief, although I have multiple problems. My primary complaint is with undiagnosed dyskinesia. I have abnormal movements that are quite debilitating. It started 2 years ago on Thankgivings evening. I drove to my son's house (about a 3-4 hour drive). Ordinarily I would have stopped once or twice but my grandson (whom I have custody of) was sleeping all the way and I didn't want to wake him, so just kept driving. When I arrived, I was in a great deal of pain. I have been suffering from severe TMJ, neck pain, and upper back pain radiating into my chest and both arms for several years. All of these pains have always seemed to be more persistent and severe on the left side of my body. Anyway, my pain in all of these areas was very extreme after driving non-stop for so long (I know, it was stupid!). I have also had problmes with chronic mid-abdominal pain and nausea, also undiagnosed for several years. We had thanksgiving dinner. I had severe nausea before, during, and after the meal. I finally asked my son to blow out all the scented candles he and his wife seem to be crazy about. They were all over the house and seemed to be contributing my nausea. I was also getting more and more light-headed and whoozy. Before we went to bed my son gave me a deep massage of my neck, upper back, and shoulders. This seemed to help the pain very little and my other symptoms were worsening. Immediately upon going to bed I started have severe spasms in both of my legs. This was totally new to me and I thought it was probably from all the driving. I was awake all night with these spasms and they continued when I got up in the morning. I could hardly walk due to the severity of the spasms and my son took me to urgent care, where I sat in severe spasms for 4 hours and finally went to the ER for 13 hours. During the time I was in the ER, the doctor was giving me Demorol for my pain. My spasms were speading up my body as I lay there. They ran very few tests, found nothing and discharged me with a prescription for pain medication. It was about this time I realized the doctor thought I was drug addict or something and just come in for drugs!! I went home very angry. Several hours later I was still having severe spasms that were all over my body. Finally, I was sitting on the edge of the bed talking to my son when suddenly I fell over in mid-speech. He lifted me back to a sitting position and I fell again, as I was totally unable to maintain a voluntary position at this point. My entire body was spasms and now I could not speak, just make nonsense, repetitious noises. I was taken back to the ER per ambulence. After 8 IV doses of Valium I was still spasming uncontrollably but had very limited speech. I never lost consiousness and was totally aware of everything happening during the entire episode. I spent 3 days in the hospital and all testing that was done was negetive, except for a very mild pottasium deficiency. I was given potassium without any relief. 2 years later, I am somewhat better. I have figured out that certain medications worsen my symptoms, as well as any type of stress (physical, mental, emotional). I have learned to pace myself in everything I do, but still sometimes have severe episodes. Most of the time now my "spasms" are primarily in my neck and upper back, sometimes into my arms. Occassionally they are total body and rarely I lose my ability to speak. I have found that Valium sometimes helps. If I take it early enough it might even stop an episode. I have learned that increasing nausea, whooziness, and sometimes hot flashes are pre-warning signs of impending episodes. I try to take Valium immediately when these symptoms present themselves and then rest if that is a possibility.
Other medical problems include: probable fibromyalgia and/or possible myofascial pain syndrome, severe TMJ, history of left sided Bell's palsy, history of T12 compression fracture (never treated, but now healed, and doctors say unrelated to my movement disorder), sleep apnea. I have had lifetime problems with chronic depression, insomnia, and PTSD.
Work-ups have included brain and spine MRIs, ECG, EKG and other heart testing, GI endoscopies. I have seen multiple neurologists. I was thought to possibly have dystonia, but results of the testing was questionable at Mayo Clinic, so I was advised to seek other opinion (this was about the 5th opinion I had sought and in Arizona, there's no place else to go after you've reached Mayo Clinic level consultation!) I have also been told that I may have a conversion disorder. However, I have sought opinions from 3 psychiatrists, all of whom feel that my disorder does not appear to be psychiatric, as I don't have a "hystrionic personality."
Sorry to have rambled so long. Is there anyone who has any suggestions on where to proceed from here????