Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contrac...
|
Need some advice on medication treatment
|
Watch this |
| View More Posts |
I have been receiving Botox for cervical dystonia for about 6 years and it is becoming less effective, normally lasting about 2 months before it wears off. Although I have had CD since 93, last fall I started getting an eye tremor (diagnosed as facial spasm). The neuro started me on Klonopin for the eye. When tremor, neck spasm and pain got worse, the dosage was increased. I have recently called the neuro's office twice telling them I am in pain, and the answer was to increase the Klonopin dosage. I increased the dosage, tried for a week, and then called again to tell them it wasn't helping with pain and that I am in enough pain that I am taking Motrin 800 or OTC pain meds every day. Their answer: increase the Klonopin dosage again. I have been with this neuro 6 years and don't think I am what you would consider a complainer, yet from my point of view they don't seem to be taking it serious enough. As patients, we know what works and what doesn't. It isn't working. I went so far as to send a fax to the Dr himself asking for him to propose a different course of treatment. He is a good neuro, but his asst. isn't the best at returning calls. I sent the fax this morning and have received no response to that. If I don't hear back after the weekend, what would you suggest?
Posted on 02/29/08, 03:02 pm |
| 5 Replies | Add Your Advice |
| View More Posts |
Make an appointment and go in to see him. I have the same trouble with the assistant in the office, but the neurologist is great when I am right in front of her or when I can get her to call me back directly. 
|
|
|
|
||
| View More Posts | ||
|
|
||
| View More Posts |
Hi, I think that I have suggested this before, but what they are giving you is most likely Botox A. There is Botox B available for people who become "immune" to A. I think I would get a second opinion. Watch those OTC drugs. I got put on Celebres (up to 8 a day) and like any NSAID they caused gastritis. It is now permanent. Good luck to you.
I think the best 2nd opinion is from a teaching hospital if that is possible for you. Good luck to you. If you look at most medical books they say that dystonia is not painful. HA!!!! Those mothers have never had a 24/7 Charley Horse!
|
|
|
|
||
| View More Posts |
Some people don't listen to what you are saying. They get used to saying the same thing as though it was a mantra. I get the same thing even tho I had a clinical practice for almost 30 years. I am concerned that you are getting treated as an individual, but as a "patient"--
|
|
|
|
||
| View More Posts |
I STOPPED WITH MY INJECTION INCREASED MY ACTIVITY WATER EXERCISE FOR CHRONIC PAIN AND PILATES.STILL NEED CLONOPIN 1-2MG TWICE A DAY WALKING CONT. ICE AT NIGHT TO MY NECK.I WOULD GET A SECOND OPINION.I'M SEEING AN MD THAT'S PHSICAL MEDICINE AND REHAB DIRECTOR.SHE HAS DONE WONDERS FOR ME.HOPE THIS IS HELPFUL.MARGE
|
|
|
|
||
Press Release Source: Dystonia Medical Research Foundation Major US Airline Discriminates Against Disabled …
Hello all. I haven't been diangnosed with dystonia, however, I find it very interesting along with my common symptoms …
Hello My name is Andrew and I was the father of a child who suffered with profound quadriplegic cerebral palsy, …
