Cautionaryily happy, lol

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Kermit's Girl
New Member

Date Joined Mar 2011
Total Posts : 3
   Posted 5/5/2011 3:12 PM (GMT -6)   

Ok, so I had an awesome Neuro appointment today. Spent what felt like forever talking over the meds and what I should be on and shouldn’t be on, what times of day I should be taking them. What other types of treatments to continue to use that aren’t medication related. For once, I felt like I got SOMEWHERE! I have been on the carousel of Cervical Dystonia/ Spasmodic Torticollis since I was 22. I am 27 now. Opinions from day 1 were: you took too much Phenergan, it’s nerves, you have too much stress, it’s anxiety, it’s Torticollis, it might be MS, it might be Wilsons, It could potentially be early onset Parkinson’s disease, it’s Meige’s, it’s Cranial/ oromandibular Dystonia. I know that most of those are roughly the same and are either primary or secondary dystonic conditions. But not until now have I felt like I was getting anywhere other than “let’s put you on a bunch of pills and see what happens”. Each mini flare was a dose of klonopin and an anti depressant, a bandaid.  I received the best BoTox on April 14th at MSU, no one had ever done the muscle mapping before. While it sounded gross and interesting all at the same time it worked! Unfortunately due to the posture change and the lack of “care” for the past 5.5 years, I now have to see a neurosurgeon for the bone spurs on my cervical spine yay.


Thankfully I take NO pain meds. I can deal with the tension most days with ibuprofen and my TENS unit and the stretches that PT taught me. My insurance sucks but it covered most of my BoTox therapy.


125mg Topamax

1.5mg Klonopin

800mg Ibuprofen PRN

Regular Member

Date Joined Feb 2011
Total Posts : 93
   Posted 5/6/2011 9:31 AM (GMT -6)   
Hi Kermit's Girl. It's great to hear that you had such a good appointment. Finding a doctor who will spend the time to really work with you and figure out exactly what will work best for you is a huge asset. I'm making a leap that your neurologist recommended a neurosurgeon, which hopefully means you've got a good one of those too. All the good doctors do seem to know each other. I hope things continue to go as well for you. Make sure to let us know how that neurosurgeon appointment goes.


Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 5/6/2011 9:42 AM (GMT -6)   
It's very good things worked out at your appointment, I hope you continue to have
good appointments and those tens units do help, and you got insurance to pay for some of
the botox which is good, mine won't cover botox at all...may that continue to work for you...
I've heard about the botox, but they are expensive...
keep us posted on the neurosurgeon appointment and I hope that goes well for you, too...
well wishes..
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Forum Moderator

Date Joined Feb 2003
Total Posts : 16799
   Posted 5/6/2011 10:18 AM (GMT -6)   
Hi Kermits Girl, it is always so nice to see a good post from someone that has something positive going on. I think we sometimes forget that it really does happen, some times more than we realize. I do hope everything continues on the uphill swing for you. I think its awesome that you are managing this without pain meds, kuddoes to you.

Take care and let us know how the appt goes with the neurosurgeon.
Moderator Chronic Pain Forum

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 5/6/2011 1:02 PM (GMT -6)   
           Hello Kermit's Girl!
                 I just wanted to pop in here and "Welcome" you to the CP forum!
       As you can see we have friendly and warm members ready to support you at a moments notice!
          I too! glad to see that your appointment went well. Sometimes those are hard to come by. shakehead
               Again "Welcome!"
         Take care!
          SE wink
Moderator Chronic Pain Forum

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