I saw a spiffy new doctor today. She specializes in Tourette Syndrome, but is also a neurologist, and she knows more than a thing or two about movement disorders! Yay!
Based on my history, I do NOT have Tourette Syndome.
The preliminary diagnosis is either Myoclonus, or Dystonia.
Good news: They both (generally) respond well to Clonazepam, which is what I have been prescribed. I am starting on a very low dose, and over 3 weeks, I'll (hopefully) be up to a dose that will do some good. She will be setting up a follow-up appointment with me in about 6 weeks to see if it's working, or if we need to seek alternative treatment options.
While I was there, she also said she arranged for me to be tested for Epilepsy, to see if the Myoclonus (if that's what it is) is Juvenile Myoclonic Epilepsy.
She also believes that the diagnosis of Truncal Ataxia was wrong, and that it was probably generalized Dystonia which sent me to the hospital. Speaking of which, she told me that would have been more "normal" had I been prescribed dopamine inhibitors instead of a dopamine agonist. Just another thing that I don't do "normally." I seem to have the polar opposite reaction to a lot of things.
Ooh... Just read up on the side effects... They include "paradoxical reactions" so this time if I have the opposite reaction to the drugs, it will at least be expected. I think this bodes well for me.
P.S. Spell check is absolutely useless for medical terminology.
Come see me on book tour!
16 hours ago
3 comments:
if you copy and paste the link below into your browser it should go to the dystonia site as it describes all the different types of dystonia. (I don't know how to give a link any other way by way of commenting I am afraid)
Whilst I am pleased the specialist gave you a diagnosis I am surprised she couldn't be more specific. Dsytonia, it mentions on the site can also be indicative of other conditions.
Does she think you may have myoclonus dystonia or another sort?
Both my daughter, myself and my father and latterly my son good grief have all had torticollis which appears to have been inherited, my daughter has severe nerve damage in her neck as result.
I do hope they are going to let you have ambulatory testing for the possible JME as normal EEG's (eeg sorry I get them mixed up) do not identify it!
I hope the clonazepam helps.I too would recommend starting on a low a dose as possible and rising very slowly to avoid as many side effects as possible.
I wonder how this med would interact with sodium valproate (normally first med of choice for JME) should you require treating with an aed for the possible JME. Only reason I know as you know is both my husband and son have JME.
Although I am not sure if you have ever had a full seizure as normally with JME if left untreated it is fairly normal to go on to have them if its not caught early enough.
Good luck with the efficacy of the clonazepam I hope a low dose is sufficient to help with the dystonia.
Please look after yourself and do let me know how you are doing.
I really feel its time life gave you a break, you so deserve one.
So please accept a gentle virtual hug from me, a fellow EDSer that understands.
http://www.dystonia-foundation.org/pages/forms_of_dystonia/41.php
I like your "spiffy new doctor". She seems to have something of a clue. Do you feel like you are being heard by her? I have a good feeling about this new partnership.
I'm on clonazepam too, but mostly for anxiety and sleep problems. Useful stuff.
Sending you big soothing hugs!
~e
Achelois,
Thanks for the link! As the doctor was bouncing between myoclonus and dystonia, my best guess would be "Myoclonic Dystonia" or with the history of Epilepsy all over my family, I'd venture to guess Myoclonic Epilepsy. (I still have no idea... could be both...)
The reason she couldn't be more specific is that I didn't have any "episodes" while I was in her office, except one very minor chest jerk which was hardly visible.
I've never had a full-blown seizure, but until I was on the Pramipexole, I'd never had "dystonic" symptoms. The Truncal Ataxia/General Dystonia I was put in the hospital for were never present to any degree (in hindsight my spine has been ever so slightly twisted for over half my life), but even after being off the meds, I still feel like my spine is a wet noodle half the time. It is possible that the dystonia was caused by the medication, and the myoclonic symptoms have just evolved and worsened.
Elise,
I like my spiffy new doctor too, but as she specializes in Tourette's, she will most likely not be the doctor handling my case once a solid diagnosis is made. She will probably end up telling me to follow up with my GP, and I'll never see her again, or she'll refer me to different specialist, and I'll never see her again.
It is truly annoying how health care is set up. I finally did find a doctor who listens to me, and contributes pertinent knowledge, and she will probably not be doing anything beyond diagnosics.
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