Jodes's Page
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Jodi
Cervical Dystonia
Tx= botox
Years Dx= 7 years (onset 14years ago)
PS- "glad" mine is just cervical...blessings to all of you who have to put up with more than 'just the pain in the neck!'
Hey Chelsea. Welcome to the group. I find it fascinating how many dystonia patients are told it is just stress when, ironically, the disease IS worsened by fatigue and/or stress. Many of us subconsciously just learn to mask our ticks or tremors...bu…
Hi Noelv,
Thanks for the info...I know that massage seems to help me directly following botox shots, as far as how well the botox works and helping with side effects, but follow up massages provide relief that is always short-lived. I am going in t…
Hi Beka, I think that maybe we need to change our approach a bit on getting assistance on increasing awareness? Everyone was in an uproar about Vanessa Williams being a spokesperson for Allergan, and we were all wondering why the company hasn't done…
I have had delayed results with Botox, as well, resulting in difficulty swallowing; but not to the extent that you are dealing with. I am so sorry to hear that you are going through this! Most times, I have pretty quick relief from the botox, but th…
I found it interesting when I brought this topic up to my neurologist. He said to definitely NOT tell future employers about your/my dystonia, unless it comes up as something that prevents you from doing your job...and NOT until after you get the jo…
I completely agree...what makes botox treatment so difficult with cervical dystonia is that the disease actually moves. If a muscle is continually targeted with the botox, your brain will find another one to pick on. If you keep injecting the same m…
We might get more results working with the Allergan Product Manager for the therapuetic side of Botox, rather than the head of marketing, Debbie Gardner. Product Managers are more invested due to the need for quota attainment, as well as more focuse…
Hi! I'm completely new this, so hope I don't put my foot in my mouth.
I used to work for a pharma company and have several Allergan colleagues...it is interesting, from what I have heard, that the company sells more units of Botox for therapuetics t…
Thanks for putting this into the forum. I, too, have had my share of horror stories--most of them involve being over-medicated with botox. I kept telling the first neuro I went to that I was having a hard time holding my head up and was in a great d…
This group is moderated and hosted by Beka Serdans, RN, MS, NP, founder of Care4Dystonia.org.
Comment Wall (3 comments)
- At 3:50pm on July 25, 2009,
Ellen S said…
- Welcome to WEGO Health, Jodes - we're so glad you're here!
What brings you to our community of Health Activists? I see you've not had a chance to take the Health Activist quick-quiz yet, so I will point you there first. It's always interesting to see where each person's strengths and interests lay!
I am active mostly in the Migraine group because of my specific interest in educating Migraineurs and their families. I have Dystonia tho as well, and spend a lot of time there as well as the Chronic Pain group. I am all over the site though and have many different health interests so you'll probably see my face in quite a few places!
Don't hesitate to contact me if you have any questions about what goes on at WEGO Health, we're so glad to have you here!
Cheers!
Ellen
- At 10:50pm on July 24, 2009,
Deanna said…
- Were you recently diagnosed?
- At 10:04pm on July 24, 2009,
Deanna said…
- Welcome to our special page. Its a great place to feel where you belong with people understanding.
Deanna
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
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