Hi Karen.. thanks for the warm welcome and info!... I have cervical and oromandibular Dystonia.. (tardtive).. for about 8 yrs.. I love to take in and spread awarness, re: dystonia, anywhere I can. I tell anyone who asks.. and some who don't. Kids are great.. if someone stares at me in public.. my nieces and nephews usually begin to explain aunt stace's spazzins... hope to be here again soon..
Hi Karen, Thanks for the welcome!, I've neglected to come here since I joined and I am so glad I chose to pop in today.. I need to take more time here and really read posts and comments.
Karen, Hope your doing better. I went to appt. yesterday. The drive was to long for me. Made it to office w/cane. When I got called back by nurse movement very difficult bent over w/ stomach spasms everything joined in. waited for dr took a flexeril had hard time speaking. Mridha wants me to see the guy that taught him in southfield another long drive. I'm still on deporkote and knolopin although I was taking the knolopin 1 at bed time as needed he said no 1 every night. so thats what i will do I'm not scheduled to see him again till jan. Leaving the office was worse I basically couln't move forward leaned against wall felt like someone was punching me in stomach spasms everywere. hubby had to get wheel chair to get me out of there. tears dropping to the floor while still bent forward while people watch me go by. What a horrible day. resting today and feeling very sad. Did mirhda ever send you to see someone else? hope your day is going better! LOVE&PEACE hopeful
Hi! Karen, I saw DR.Mhridia Sept 21, he kept me on the Deporkote another month flexeril and knolipon at bed time if needed. He said I have torsion dystonia. No cure. The medicine doesn't seem to help much. I'm having to use the cane more in the house. If we go anywhere like walmart have to use wheelchair. My tremor has ben worse I have very slurred speech at times. Been walking on side of left foot for 2 months right foot joins in at times. When I shuffle around the front of me is bent forward. When I overdue it my whole body will spasm. I'm continuing to stay positive. And I like Dr. Miridha alot he's on my side. I see him again Oct 20 . This dystonia hit me 7 months ago can't believe how fast its has immobilized me. I did find a support group close to me their having a meeting in february. I'm so sorry your having such a hard time. The doctors show oct 14 is going to have a women with dystonia on. I hope you find something that helps. Yes the trip to dr. is long but worth it. Talk to you soon. LOVE&PEACE hopeful
Hi karen, I don't know if my other message made it to you. I'm not very good on the computer. I saw in one of your messages you go to Dr. Debasish in saginaw, MI. I'm going to see him tues Aug 18. Would really like to ask questions about him I'm very nervous. I am 37 and have symptoms all over from head to toe. Went to u of m was told I had dystonia and that was it also saw a couple other neuro told me to see phsychiatrist. Hope I'm going to someone that truly understands dystonia.
Hope to hear from you before tuesday. LOVE & PEACE hopeful
Hi,
I have cervical dystonia which has spread to my upper back and also the other side of my neck is very tight too. I know exactly what you mean about reading and not typing. I find that there are so many days I have a hard time forming a coherent thought and my fingers just don't want to hit the right keys. Hopefully, very soon, we will get better relief. This disorder is so tiring and painful.
Hi Karen,
I'm so bad with exploring all that there is on this website. I just discovered your e-mail to me! You are right, there are lots of Karens on this BB. So glad to have another friend! Hopefully all of us together can fight this dystonia out of us.
Hi Karen,
I can't believe that i havn't looked the the net before now. There are people out there which have dysonia. I have had dystonia for 2 years and find it hard to come to terms with still from time to time. You sound so possitive!
I am 41 years young and have 4 children, well not all children now. Oliver 20, Ashley 18, Evie 15 and noel 8. I have botox every 10 weeks and have nw been offered DBS. I t would be good to hear from you.
Hi ,
You are truly an inspiration to me to hang in there. I got a diagnosis ~ a month ago after going through 4 drs and numerous tests. After reading what you have written I know I'll get through this good day and bad.
Hi Karen, Hmmm. I'm not sure what page you ended up on, but the Migraine groups is currently active, the last post was actually an hour ago. (It's good you had me looking because I would have missed it!) Still, much of what happens there is often related to people just like you're talking about.... they've really just been there and done that and need something else to pursue. That's where I like to try to help if I can. I don't personally write a lot anymore for those who have just been diagnosed - there is much good info to be had for those people. Its those that are struggling with treatments that aren't working, side effects, etc that I really enjoy connecting with. I would love it if you would tell your daughter's friend about WEGO Health, and I'll send you my personal email address so she can touch bases with me there as well. Sometimes it's hard to reach out at first, and keeping things a little more private is just easier. Migraine is so very hard to live with, especially when it's become chronic. It can be managed tho. She doesn't have to live in that kind of pain.... Please, tell her that. I look forward to hearing from you and from her soon. Karen, such an angel you are... you're the best.... :)
Hi Karen,
Thank you for the words of hope. I have been going to an MS ansd Parkinson Dr that did the EEG, Nerve Conduction AND EMG, She told me nothing about the test nor did she give me a Dx. I had to email her and she said she thought she concurred with the Mayo of Dystonia, I ask her what type i had and she said i THINK generalized. She did tell me i should go to a Neauro that specialized in Dystonia and i have an apt on the 14 of Feb. She did put me on Klonapin but did not say for what, i had just told her i had vivd dreams and was able to go to sleep fast but moved a lot. It has helped the dreams but the pain from my butt to my upper thigh to my toes ache and hurt so bad. First it will be on the right for a while then move to the right. My neck and shoulder also hurt bad also from time to time. Im just a bundle of hurt. But maybe this new Dystonia Dr will give some insight to things. I wised we had a support group in my town but i have not been able to find one. Thanks once again and i will keep my chin up.
Hi back at you Karen,
Except for a few posts the other day, I haven't posted in so long. Thanks so much for contacting me. I hope I can do a little better with contributing. I'm going for a massage next week...hopefully it will give me some relief. Abbie's massage therapist (ST Clinic in Santa Fe) sent me an e-mail with tips for a deep tissue massage...hope this works!
Karen
Karen, Thank you so much for writing me. I read your page and i wished i felt the way you do. I need a friend, i need someone to tell me it will be ok. I AM MAD AT THE WORLD. I was Dx @ the Mayo on Oct 31, 2008. That was the first time i had heard the word Dystonia, the Dr just said there is No Cure, he did not explain what it was and i guess it was my fault for not asking but i was caught off guard. I was just glad to have a name put to what i had had for years. I had gone to many Neauros and they said it was due to Stress or all in my head. and i begain to believe i was Crazy. I was given no info, all i had was a computer to look up the word Dystonia. Which i thought did not fit me, i don't twist into a pretzle. i thought they must have it all wrong. Then i read of all the types of Dystonia.Which one fits Me? The Mayo wanted to do a nerve conduction test and EMG but the person was out so they sent me to anotheer Dr in Dallas with a referal and he REFUSED TO DO IT, HE SAID IT WAS NOT NECESSARY. What the Heck. So after 4 months of not knowing my neauro that sent me to the Mayo is doing it Tuesday. I just want to scream, i am mad all the time and i am mean to the people that love me the most, i just am having a hard time dealing with what they say i have, will i be wheelchair bound, what will ahppen to me, no one feels the pain but me it seems. I read on yours that you have Torsion Dystonia, it says it starts in childhood but you say you have had it for 22 years and you are 54. How do they determine what kind you have? Mine started with a hand tremor but my legs are the worse, They spasm so bad or the muscles tighten till they burn, then i have trouble standing or walking for days after. Please help me to understand, I hope i did not overstep my self but i just need someone with a good ooutlook to help me get to that place, i feel like i am drowning,
Freida
Surgery TOMORROW! Found out just this morning. Finally getting The Pump!
I have waited for soooo long. Now the time has come. I am in shock a little. Been e-mailing all day. Calling friends and family. Finally may get some relief. Went to Florida in November and saw my family. Was a great time, but I was in a wheelchair or on the scooter I rented the whole time. Couldn't ride any of the roller coasters at Busch Gardens! Whew! Nice to have an excuse on that one.
Listen, you take care, all my best to you in 2009!
Dave
At 12:39pm on November 20, 2008, CDavidEricson said…
Hi Karen,
Going to meet my Pump Installer (Surgeon) today. Should get a date for the surgery. I am nervous and not certain I know the right questions to ask, but I am told Dr Lee is an excellent Orthopedic Surgeon and Doctor. Fingers crossed. Take care,
C David Ericson
Las Vegas, NV
Thank you for the warm welcome. Hope the Pump has help you with quality of life as I have heard from others it has. I only hope it does as well for me. My spasticity seems to spread on a daily basis lately. It is exhausting just transferring from my wheelchair to my recliner, especially when Chinnie, my friend (cat, but don't tell her that) is already curled up in it. She makes me get in without her moving a muscle. Believe it or not, when I lived in Seattle my Neurologist gave me a prescription for a cat, because I have severe issues with anxiety, which happens to be a huge trigger with my Dystonia. It works, and no apartment has charged me for her, when I show them the letter.
Anyway, tomorrow I make my first appointment with the orthopedic Surgeon who will install the pump, and I hope at that appointment I will get "the date". I am anxious, hopeful, scared, and can't wait, all at the same time.
Take Care, and thanks again for the welcome. Will get back to you with that "Pump date".
Dave
Las Vegas, NV
You are so happy and your beautiful soul is shinning thru in your new pic .. I didn't even notice the leaning. Be sure to let us all know when your article comes out so we can all read it. I always love reading what you have to say, your words are so elegant and full of grace, hope and love.
Let those beautiful fall colors engrain in your thoughts and enjoy every second of them ... here in the desert the dirt is still brown, no changing of colors here, so enjoy them for me to my friend :)
Big hugs and lots of love too :)
P.S. I really need to put your poem on my myspace .. have you been there lately, I started to put all the dystonic poems in motion, I call it my "Poetry in Motion" and I have a new pic I took out in the desert a few weeks back that would be perfect for the background of your poem.
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Hope to hear from you before tuesday. LOVE & PEACE hopeful
I have cervical dystonia which has spread to my upper back and also the other side of my neck is very tight too. I know exactly what you mean about reading and not typing. I find that there are so many days I have a hard time forming a coherent thought and my fingers just don't want to hit the right keys. Hopefully, very soon, we will get better relief. This disorder is so tiring and painful.
I'm so bad with exploring all that there is on this website. I just discovered your e-mail to me! You are right, there are lots of Karens on this BB. So glad to have another friend! Hopefully all of us together can fight this dystonia out of us.
Talk to you later!
I can't believe that i havn't looked the the net before now. There are people out there which have dysonia. I have had dystonia for 2 years and find it hard to come to terms with still from time to time. You sound so possitive!
I am 41 years young and have 4 children, well not all children now. Oliver 20, Ashley 18, Evie 15 and noel 8. I have botox every 10 weeks and have nw been offered DBS. I t would be good to hear from you.
You are truly an inspiration to me to hang in there. I got a diagnosis ~ a month ago after going through 4 drs and numerous tests. After reading what you have written I know I'll get through this good day and bad.
Thanks!
Thank you for the words of hope. I have been going to an MS ansd Parkinson Dr that did the EEG, Nerve Conduction AND EMG, She told me nothing about the test nor did she give me a Dx. I had to email her and she said she thought she concurred with the Mayo of Dystonia, I ask her what type i had and she said i THINK generalized. She did tell me i should go to a Neauro that specialized in Dystonia and i have an apt on the 14 of Feb. She did put me on Klonapin but did not say for what, i had just told her i had vivd dreams and was able to go to sleep fast but moved a lot. It has helped the dreams but the pain from my butt to my upper thigh to my toes ache and hurt so bad. First it will be on the right for a while then move to the right. My neck and shoulder also hurt bad also from time to time. Im just a bundle of hurt. But maybe this new Dystonia Dr will give some insight to things. I wised we had a support group in my town but i have not been able to find one. Thanks once again and i will keep my chin up.
Except for a few posts the other day, I haven't posted in so long. Thanks so much for contacting me. I hope I can do a little better with contributing. I'm going for a massage next week...hopefully it will give me some relief. Abbie's massage therapist (ST Clinic in Santa Fe) sent me an e-mail with tips for a deep tissue massage...hope this works!
Karen
Freida
Big hugs and lots of luv
Robin
I have waited for soooo long. Now the time has come. I am in shock a little. Been e-mailing all day. Calling friends and family. Finally may get some relief. Went to Florida in November and saw my family. Was a great time, but I was in a wheelchair or on the scooter I rented the whole time. Couldn't ride any of the roller coasters at Busch Gardens! Whew! Nice to have an excuse on that one.
Listen, you take care, all my best to you in 2009!
Dave
Going to meet my Pump Installer (Surgeon) today. Should get a date for the surgery. I am nervous and not certain I know the right questions to ask, but I am told Dr Lee is an excellent Orthopedic Surgeon and Doctor. Fingers crossed. Take care,
C David Ericson
Las Vegas, NV
Anyway, tomorrow I make my first appointment with the orthopedic Surgeon who will install the pump, and I hope at that appointment I will get "the date". I am anxious, hopeful, scared, and can't wait, all at the same time.
Take Care, and thanks again for the welcome. Will get back to you with that "Pump date".
Dave
Las Vegas, NV
You are so happy and your beautiful soul is shinning thru in your new pic .. I didn't even notice the leaning. Be sure to let us all know when your article comes out so we can all read it. I always love reading what you have to say, your words are so elegant and full of grace, hope and love.
Let those beautiful fall colors engrain in your thoughts and enjoy every second of them ... here in the desert the dirt is still brown, no changing of colors here, so enjoy them for me to my friend :)
Big hugs and lots of love too :)
P.S. I really need to put your poem on my myspace .. have you been there lately, I started to put all the dystonic poems in motion, I call it my "Poetry in Motion" and I have a new pic I took out in the desert a few weeks back that would be perfect for the background of your poem.
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