Dystonia is not an enchanted land. It’s a movement disorder.
I had been to my neurologist about my having no balance and not being able to walk due to the jerking in my knees.. She wanted me to re-start gabapentin (I’ve never noticed it helping like that before..) and physical therapy. That’s literally all she was going to do.. I knew there was more too it.
Since I do have mold toxicity I decided to go to a functional neurologist/chiropractor. She gave me the longest neural exam I’ve ever had! She did tests and made symptoms happen I didn’t even know about. There have been jerks and twitches over my entire body, it’s affected my quality of life, it’s affected every part of my life. I just thought I was too tuned into my body. It turns out I might not be crazy.
My brain has a disorder that mixes the signals and pathways in my brain. When you move your index finger, only that one part of your brain should light up.
(This is sad I know but it’s a good explanation) Drs used monkeys to realize we can fix the mixed signals and retrain the brain – The index finger of the monkey is removed. Eventually when the thumb or other finger moving will light up the part of the brain the index finger used to signal. Retraining the brain to not need the missing finger. When the finger is re-attached eventually it starts lighting up it’s own section again. My brain is constantly reacting which causes my body to constantly react. When I move my finger other places in my brain light up. Writing a letter (which is pretty much impossible) causes my legs to contract for example. I always feel like I’m falling, my brain doesn’t know where my feet are or really where my body is in terms of the ground. This is why I get vertigo when i’m walking and have no balance due to extra pressure in my brain caused by the inflammation in my brain and the dystonia impact.
Right now as I’m typing this there is a twitch moving up and down my legs and they are clenched. My muscles are constantly clenching when they shouldn’t be. This causes exhaustion, pain, brain fog, inability to walk unassisted, inability to get a sentence out, stuttering, Blepharospasm (uncontrollable blinking as the muscles around my eyes contract), slow eye tracking, stuttering in fine motor skills, and jerking is now in my arms, face, neck, abdomen, and head in addition to my legs. The leg jerking alone was debilitating and has caused me to start using a power chair as i’m too weak to push myself. The jerking and movements in the other parts of my body are life altering.. at this time I can still drive short distances but at night my eyes get affected by the lights and extra blinking starts which makes me nervous which makes my arms start to jerk.. I’m really struggling and have to wait until Nov 10 to go to a movement disorder center to make my diagnosis official and hopefully start some meds to control my body.
I’m trying to decide whether it’s time to go to the Cleveland Clinic.. has anyone who read this far gone to that clinic? I’ve also been told to go to Mayo. But I don’t know how to make that decision.. I wish I had gone to this neuro chiropractor Dr. Brindisi months ago.. but I thought I was taking a break but things got too bad again. I planned to travel on thanksgiving and attend a show of my favorite band Our Last Night but now i’m worried the movement disorder center may not give me help in time.. it’s hard to balance taking care of my psyche and having fun with treatment..
I’ll post about the mold soon, it’s something i’m still unsure about. If you have had experience with mold please check back. Mold is so confusing.
Finding Carly Again 