Five months after my initial diagnosis and treatment, my condition had gotten worse after incidental exposures to almost negligible amounts of manganese (e.g. living next to an active train track). I went to see a neurologist to ensure we hadn’t missed something like a tumor, and also hopefully get some relief because by then three of my neck muscles refused to release, even when lying down.  It was so incredibly painful!  I was lying down 22 hours a day, only getting up to wolf my food down, and not even able to see what I was eating.  I thought my neck was going to break.

The first neurologist had the highest ratings of several in my area.  After a few minutes of reviewing my extensive intake forms and checking my muscle condition, he diagnosed me with idiosympathic cervical dystonia (meaning unknown or unproveable cause).  He said the treatment for it was Botox injections into the neck, guided by an EMG. 

I asked about my manganese blood tests showing high levels like a person with liver cirrhosis, and lack of homeostasis.  He left the room  for around 10 minutes.  Then he  told me that he didn’t know what to do with the manganese information, and that I was wasting my time chasing a false hope.  The only treatment for cervical dystonia was Botox.  Then he admonished me for waiting so long to see a neurologist and said that my case had become too complex for him to treat, and he would give me a referral to a nearby, well respected university research hospital which had a neuroscience branch.

There were so many things I wanted to argue, but I knew it was pointless, so I graciously thanked him for the referral.  I had lots of hope that this referral would help me, since a referral from a neurologist was the only was to get an appointment with the university hospital neuroscience center.

The neurologist at the university hospital was much friendlier.  He also diagnosed me with idiopathic cervical dystonia.  I asked him about my manganese blood tests and he said that the only way for him to diagnose manganese -induced dystonia was to do a special type of MRI called a T-1 weighted MRI, within a couple months of exposure.  This would pick up dense manganese deposited in the globus pallidus region of the basal ganglia.

There is no way I would have done an MRI in my condition because:

• MRIs routinely involve injection of a contrast agent.  Normally it is gadolinium, a heavy metal purported to be safe and readily excreted.  However, gadolinium showed up in my recent calcium EDTA provoked urine tests, three decades after my last MRI.  Interestingly, there are talks to replace gadolinium with a “safer” alternative – manganese!  No way!
• More than six months had passed since I quit my job – the MRI would likely have picked up nothing.
• I have an old stainless steel surgical implant still in my body, which is made of 1-2% manganese, so I did not want to encourage its decay.  Microgram amounts matter when manganese is released directly into the bloodstream.
• There is no approved/available treatment of manganese toxicity in traditional medicine besides chelation, which is not very effective except for possibly sodium PAS, which is no longer being manufactured.    I actually spent many hours confirming this fact through another university hospital’s second opinion program.

The neurologist and I agreed there would be little point in doing the MRI.  The neurologist also offered me counseling, because emotions are often tied to the muscle-control issues.  Think of people complaining about neck or shoulder pain after a stressful experience, for instance.  I declined the counseling since I knew it was not a primary contributor to my condition. However, in this website I will share some of my research into potential biochemical connections between dystonia, PD, sleep disorders, and OCD and depression.  These biochemical connections generally involve disturbed production of serotonin, dopamine, GABA, and other neurotransmitters, and they start in the gut.

For relieving the neck muscles, the only viable option offered was again Botox.  However in my case which included tilting back of the head, it was less likely to work [2].    The neurologist also cautioned that my Botox requirements would likely increase or change locations after a few years, as the immune system developed a resistance to the Botox.   This didn’t make sense to me, as how could the immune system recognize a simple toxin?  Also, how would increasing immunity to Botox be differentiable from the expected cervical dystonia progression over five years, thereby requiring more Botox to counteract?  At the core of this, Botox can only be expected to relieve symptoms.  It has not been shown to slow the progression of the neurological disease, but rather cover it up until it becomes a lifelong disability.  

Ultimately, I accepted a Botox injection because I was beyond desperate.  Nine days later, I ended up in the ER.  To top that off, my muscles didn’t release at all in the following months, so that was effectively the end of my neurologist treatments.  

A third neurologist I had contacted earlier by phone was interested in my manganese research, and actually had research experience into the connection between manganese and movement disorders.  Unfortunately, I was unable to get to her more distant location for an examination due to the intense pain.  Now that I am better though, I am happy to say I have made contact again and believe she can help us on our mission, to improve patient outcomes in CD and PD.