So... I have been in pretty bad spasm since Thanksgiving. Possibly even before. I am honestly losing track of the days now. My speech keeps bouncing from inaudible to pretty clear. So I did a video while it was mostly clear.
So now we wait. we see if it calms down. If it gets worse I could be in real danger.. so I will be going in. If it stays as in I am uncomfortable but I think I can cope, because I hate being drugged.
My girlfriend started a GoFundMe page today at first I wasn't sure how I feel about it. Because I hate to ask for help, she knows this Thats why she did it anyway while I was sleeping. I need to get to one of 3 places. The Mayo Clinic, the NIH, Or the UK. All these places Have some serious studies going on about Myclonus Dystonia. (along with other complicated brain disorders) My doctors are good here they are, but the research just isn't being done here. It is scary to be told all the time your disorder is not fatal, but then to be turn around and told that your organs are in distress and in danger.. It makes me feel frustrated. Is that why dystonia is so little talked about? Because it is not Directly fatal?? What about the damage it does to my intestines and stomach? Or the days and days and DAYS on end it steals from me because of feeling terrible. Or how about having to go to a hospital just to be drugged so your own body doesn't crush your heart and lungs?!
I am not asking for everyone to give money.. if you can cool but really what I want is a medical grant. What I want is a point in the right direction.. what I want is a doctor that will follow me closely and fight with me the entire way. I want the means to get to this doctor wherever they may be. I want HELP... Help finding that someone finding that place. I want help from a body that is determined to break me down slowly. So PLEASE SHARE THIS... share my blog.. share my videos... share share share with everyone you have ever met so that maybe I can find someone that knows something. Because I feel sometimes like me and a very select few are fighting alone. My little army needs to be a big army and we have a giant monster to defeat. Most days I can be positive. I can smile and and still be happy. Today I am thankful to be alive but I am honest when I say today I am scared... and tired. SO SO SO tired. If nothing else please say a prayer.
Update: nurse called at 6 she said that they were looking at my notes and that the last testing showed all my pelvic muscles being in severe spasm. They are considering this to be unusual. She encouraged me again to come into the ER for even the tiniest of progressions. They are also calling in another muscle relaxer.
ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
ReplyDeleteIs my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.
Dear FRIENDS,
ReplyDeletenow i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.