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Hello! I was diagnosed with overacive thyroid and then put on a heart med. 3 months later it (thyroid) was low. I was scanned- and ONLY the rt side of my thyroid (The side of my dystonia- a neurological disorder) was swollen and there were 4 nodules…
Join us to exchange ideas and share experiences with Thyroid-related disorders. Discuss the latest research, testing, and treatment options for this vital gland.
I have 2ndary generalized dystonia, spinal and cervical torticollis (where the unbearable pain is),hemi-dystonia (only my rt side), essential tremor, myloclonus and in the past year overactive thyroid and 4 nodules only on my right side. I have the…
This group is moderated and hosted by Beka Serdans, RN, MS, NP, founder of Care4Dystonia.org.
Profile Information
- Location
- 75218
- More about me (my health interests and reasons for joining WEGO Health)
- I have generalized dystonia (my entire right side), torticollis, essential tremor, and of course the symptoms that pop up we deal with as they come. I have had it since 2005 and got the baclofen pump july 2008 to try and slow or stop the muscle spasms and storms. Before all of this I was active, healthy, never a surgery. Now my "2nd job" is a full time fight as an advocate and dealing every moment with dystonia, meds, treatments, or doctors. :) I fight for awareness for those who have no voice or no support.
Comment Wall (5 comments)
- At 10:39pm on November 7, 2009,
Elaine said…
- HI Amy,
I've seen your videos on You Tube. I have 2 videos posted on You Tube too.
I need to record a recent one , in which my movements are consistent.
In my first 2 videos, the Neuros were putting me on seizure meds which had me going all over the place. But they'd never admit it was the meds.
I think you join the Dystonia Group.....by going to the Home Page and on the right side, search for the group.
I'm a member of that group too.
Elaine
- At 11:11am on October 8, 2009,
Ellen S said…
- Hi Amy,
Was reading about your thyroid issues this morning. How was your biopsy? Can you share your story with us in the Thyroid group? Endocrinologists don't know anything about Dystonia, Neurologists barely know what's going on with it! Looking at thyroid issues is one of the first things that is supposed to be done when you get a Dx of Dystonia, as thyroid problems can rarely result in secondary Dystonia. I have Grave's (and Dystonia too) and have been on that rollercoaster most of my life. I'm a smarter patient now, hoping to help others understand their illnesses as well. I'm looking forward to hearing about your results and will keep you in my prayers!
- At 4:47pm on August 20, 2009,
Jenn said…
- you are fabulous.
- At 3:04pm on August 20, 2009,
toots said…
- Welcome Amy, I too have Generalized Dystonia, Torrrticollis and Meige Syndrome in the face plus my arms and hands are affected. I geat Botox injections every 3 months. They help but I have good days and bad as you probably know. Would you like to be my freind? Sheilla
- At 9:27am on March 6, 2009,
Vanessa_Rhinesmith said…
- Welcome Amy! Wow, you are a rock star in every sense of the word.
Welcome to WEGO Health. I'd encourage you to join the Dystonia group, you'd bring such amazing value and insight.
Please let me know how I can help you get started!
Be well,
Vanessa
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