I have been dealing with this for over 10 years but was recently diagnosed. I am being treated with zanaflex and diazapam in high doses. The dose must be increased durring flare ups. This is a rare disorder and little is know about it. Baclofen was no help, flexeril, and other benzo's were ineffective as well. I am having appetite issue along with this. I have lost about 50 lbs in the past 6 months. I am not sure if this because of the meds or the disorder. Any advice would be appreicated.
oneinamillion92, welcome to the site, & I apologize that no one has answered your question. Yes, you have a very rare disease there, & diazapam is used quite successfully to treat it. I will give you a link to read more about this disease. Again, sorry no one had answered your question sooner. Maybe this answer will open it up for you. Wishing you the best...
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