Lumbar punctures, bloodwork, emgs, eegs, cts, mris, neurological assessments up the wazoo, years of misdiagnosis. Finally an appointment with my MDS and the verdict is...Generalized dystonia with severe Paroxysmal dystonia on top (just what I thought). Likely genetic (testing to still be done). DRD is out.
New drug to control paroxysmal dystonia is Dilantin. no more gabapentin. yay! Will introduce Artane to control generalized dystonia in 6 weeks and will then phase out Valium. Then we play with the drugs. Continue Botox every three months. Fast tracked for DBS surgery, meaning probably in about a year or so until my first appointment with the surgeon let alone for hthe surgery. Still leaves lots of time to test out the drugs and see if they work but if they don't they want me in for DBS asap.
Step 1 done. Many more steps to go. Anyone with experience with these drugs? I know DBS is frought with its own issues but I will cross that bridge if the drugs don't work.
Love Rosie
