Hey @rwinney, thank you so much for your kind thoughts. I apologize for the delay in response, I saw your post earlier today and have been literally trying to find the words. I met with two new neurologists at a local research hospital here. They were extraordinarily thorough, almost caught me off guard honestly. For starters, they are suggesting things like topical creams (I've tried before and told them I'm not up for that - tried before, not my thing), medication addition/switch (I also told them I'm not interested here either bc of previous experiences), CBT (I'm leary of, but not totally dismissing), mindfulness (I already do daily) and they want to do a new set of EMG/NCS on all my limbs. I'm meeting with my regular neurologist on Wednesday and my PCP soon after to discuss all this and more. The dystonia is increasing and all my symptoms are exaggerated lately. Not sleeping well at all, pain is still high, I'm highly fatigued 24/7, slurring & stumbling over my speech, nausea is on 'n' off, lots of new sensations etc etc. I need to call the genetic company who did my testing to find out if they tested for HTT, these new guys are really expanding their thinking; considering Huntington's etc. I finally broke down at work the other week bc I just got overwhelmed and couldn't keep it in anymore. It hurt, but felt good to cry and just "get it out". I've really been struggling lately, tbh. I was so glad that my pastor reassured me today that it's ok to be authentic and not ok at times. I needed to hear and receive that. The mental battle is worse than the physical, I think. A lot on my plate....keeping really really busy with school, which I love, but is a huge commitment. Today, I found out a very close friend of mine who's been going thru radiation treatments for liver cancer now has stage 4 colon cancer. My Mom had stage 4 cancer and is 8 yrs in remission now, so I know the outcome is potentially very positive still. But, it's still a shocker and another sword to my heart. Not to mention, I'm not doing good with eating and drinking; it's never been a priority, unfortunately. *sigh*. Thankfully, all the children involved in my life keep me going. ........ To answer your questions, my symptom management feels nonexistent and I have not introduced anything new into my life. I guess you could say that even the encourager sometimes has "down days" and needs a break. My deep desire is still to remain positive and help others in this, but I have also realized that I am incapable of doing so if I am neglecting to take care of my own self. I am deeply hurting and wrestling with some things 🙁