Teresa Beaver
I haven't found to many people to talt with about this so please email me I would love to hear from you The Dr. Im seeing is a specialist in this field.. and yes she did order the blood test that the other person posting was asking about. She did say however that sometimes the blood work can come back negative but it doesn't mean you don't have it. So your right Im trying not to worry to much about it yet. I have severe episodes of muscle spasms. I thought this was the same thing that happened with a Dystonia attack as well. She has seen many Dystonia attacks and said they don't present the way mine did, not to say that its not possible for me to have Dystonia. But anyway I have episodes where my hand and fingers tighten or spasm which ever you want to use and they can't open or can they be pulled open. My head pulls over to one side and my face spasms and my eyes close, with one usually tearing. I have my legs that stiffen straiht out and my feet pull down with severe spasms that are so painful. It even runs up to my thighs through the back of my buttocks an up into my back. After a couple of hours the spasm let up and then I can hardly walk. The following day Im so sore that I feel as if i have been in a car accident or something. It started out With my face only and having severe twitches, muscle facalations. All of these things can be brought on by touch or sound. They are progressingly getting worse. What use to be 1 episode a month has now become everyday sometimes more than once a day. I've basically become home bound but am still able to walk and get about. I just can't go shopping and do any walking for any length of time. Sometimes when I walk My back tightens with cramping that will go down my legs and pull me to one side. This was why I was asking about the wheelchair. Of coure my husband doesn't think I need one, says I don't need to go shopping lol. Thats one way of saving him money huh.. The baclofen and valium have not stopped the espisodes but has made it where the spasms are not as severe, but causes my muscles to feel like there vibrating when one is over. I don't know if this is because my muscles are having to relax due to the meds, but they still are trying to tighten up so this causes a vibration feeling. This is all so wierd isn't it? Its really nice to be able to share it with people that know what your talking about. No one else even can come close to understanding it. I do wonder sometimes if certain families are prone to gnetic mutations,(if you call it that) I know I have had some really odd things happen to me. I even have the muscle spasms in my midriff and they are begiining to affect my breathing. I am taking 120 mg of baclofen and 30gram of valium. I've read where some people have not such good prognosis and otheres that do If any of you would like to talk please email me. Thanks so much God bless you all Teresa