a first. somehow I have 2 accts. One on Minter54@gmail.com so go to both. When i switched from mac to PC it messed it up. way over my head! Got some interesting facts today that about 10 percent go away if under 6 months. after that its permanent. how wonderful! I am about 1 month or 6 wks into this so I can only start praying that I will be one of the 10 percent. Still have to do the EMG and the MRI. Neuro thought I should be knocked out for both. I can tell when Im pulling the large muscles in my neck stick out. I suppose those will get the Botox. I hear it doesnt always work because your body builds up antibodies to it. That true anyone? I miss the stillness of reading. resting, watching TV. even typing I have to look thru my right eye. I used to be able to sit perfectly still for hours and read. those are the things I miss most. Most everything else I can do. Got stared at for the 1st time at the nail salon. That was hard...My future! Time for bed ..I dread it cause it hard to get to sleep when you are always moving! Thanks for reading!
Shabby Tool Box
8 years ago
Sheri,
ReplyDeleteYou are so funny. I'm assuming because you stated you have to look through your right eye that your head twist to the left? If so, welcome to the lefties, a club no one wants to ever be a member of. I'm also assuming from reading your other post, your a new member? If so, I wanted to send you some things that helped me in the begining. I'm a researcher by nature, if I can understand it, I can deal with it. But before I get started...Hello, my name is Keke, I've been a lefty since the onset of my Cervical Dystonia in June 2008. I found your blog through my "Google Alert." Google Alerts are the best thing since sliced bread! Highly recommend. Blasted! I'll need to send this in two comments, Google said my comment was too long to process!
All you do is go to Google, sign up for the alert using the word "Dystonia." Once that's done, Google will send you an email with links everytime anyone, anywhere writes someting on the web about Dystonia. CD can be a lonely place so my "Google Alerts" helps me stay conected to others with this horrific disorder as well as learn about CD and medical efforts for the treatment and cure. I will also end this comment with some other links that may be helpful to you. Now for the commiserating...The onset of my CD was in June 2008, went full blown by Thanksgiving 2008. They say that between your first 2 and 5 yrs is when your CD is developing, by the end of yr. 5 you'll know the severity of your CD and it stabilizes? Having said this, the key words is "they say..." Dystonia is a highly individualized disorder. I have seen and fired twelve doctors before I found one that offered me a diagnosis and treatment. I'm working on my third round of botox treatments. My last was July 20th. My next is in October. My first treatment was splendid and almost put me back to normal. The second didn't seem to work as well for me and I had a mini freak out thinking I was perhaps developing antibodies against it. The answer to your question above is yes, this can happen...However, I was under an extreme amount of stress at that time and I am doing better now. I was also on my monthly cycle, which strangely has an effect on my CD. Those pesky hormones... Highly recommend that you find a nuero that has a large patient base of people with Dystonia. I've never heard the 10% thing, but I'm a girl that believes anything is possible. About the nail salon, "stupid is as stupid does," I think the stupidest thing that ever happened to me was a man at work asked me, "so, what's wrong with you?" I said, "I have Dystonia, a rare nuerological movement disorder." He said, "Wow, that must be demoralizing." I said, "No, not really, except for when people like you stare like you've never seen a suffering human before and make ignorant comments like that!" It's ok, hopefully once you get your botox it will put you back to "appearing" as if CD is not a part of your life. No one can hardly tell with me now. Only if I get over tired or stressed does my head twist slightly to the left.
ReplyDeleteThings that helped me feel better in the begining, pre-botox that I still sometimes use:
1. Terrycloth spa neck wraps that you can heat in the microwave or freeze. "Earth Theraputics" has a nice line that is flavored with lavender and chamomile. They have many different styles, I use the U shaped one.
2. Someone made me a neck wrap that was simply a tube sock filled with rice. I used this to offer my neck support when I was driving. It worked really well because it was long and I could twist and wrap it where ever I needed the support, and on any given day my need would be different.
3. What they call a "Tenz" machine. Those little electrical zaps really helped my muscles relax, the positive effect would however depend on how twisted I was at that moment.
4. Accupuncture.
5. Messages.
Now for the links:
http://www.dystonia-foundation.org
http://www.care4dystonia.org
http://www.torticollis.org/
http://www.stclinic.com
There are so many more, as well as a lot of people blogging about it. If you set up a "Twitter" account and search for
#Dystonia you will also find others out there in our club.
Sorry so long, hope this helps. I wish you wellness!
Keke
Hey Keke! Thanks for visitng my site. Im not alone in the universe! I am new at this although i have been having pain for 5 yrs. til Jan and then the shaking and pulling started. done it all like you Drs therapy. they all think its a disk or muscle problem. The Neuro said most Drs dont know much about it. I found a Movement Specialist Neuro. Ive only had one visit but there's a bit of a translation problem...I have heard Botox is very painful, is that true? also let me ask yo how do you get to sleep? I cant fall asleep unless medicated. Is that going to be the way it is? Thanks for reaching out to me1 Shari
ReplyDeleteHey again...check out my other accidental site Minter54@gmail.com Sharisramblingsadystoniadiary. Im new at this so i get messed up often...
ReplyDeleteI sent you an email, let me know if it works.
ReplyDelete=)