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Originally Posted by momto5
Hi Sophie. I don't have a movement disorder, but my 6 year old son does. I sure hope you can find someone who's willing to try some treatments for you. There are lots of different categories of drugs that can help movement disorders. Usually the first one to try is Levodopa (L-Dopa). If that doesn't work, there are other categories of drugs that might help (anticholinergic, benzodiazepine, MAO-B inhibitor, etc.). Are you seeing a neurologist?
If you want to connect to a community of similar people and are on Facebook, you should look up "Dystonia Friend." I can imagine how lonely and isolated you must feel. Movement disorders are so rare that you may never meet another person face to face who's going through what you are going through. Maybe you can at least connect to an active community on the Internet.
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Thanks for you're ideas! I'm seeing doctors and neurologists for 6 years now. Because they can't find what is exactly wrong with me, they are carefull with medication. Medication for epiliptics and especially parkinson (dopamine) seems to work. But it's hard to convince a doctor to try something new. I'm curius about L-dopa's because they work ofter simulanius with other parkinson medication.
Yes, I feel isolated. I don't fit with my diagnoses; conversion disorder, so in that group they all give the advice to go to an neurologist. So I'm in between 2 medical worlds. but I will connect myself with the group on facebook.
If you want to read anything about my medical adventures, you cvan read my blog. Just see my profile!
Bye Sophie, And say HI to your son from me!
