Editor’s Note: The following patient story was submitted to us by Christoph Muth, a 52-year-old German man currently residing in Thailand.
I am living with a very rare, highly complex, and progressive neurological multisystem disorder.
My documented diagnoses and working diagnoses include:
- Drug-induced Neurological Disorder with Dysautonomia
- prolonged PAWS associated with Duloxetine/Cymbalta, with a current residual Cymbalta dose of approximately 6 mg and a 5 mg Prozac bridge that I have been taking for the past two years
- Idiopathic Peripheral Autonomic Neuropathy (G90.0)
- Progressive Dysautonomia / Neuro-autonomic Dysregulation
- Harlequin Syndrome
- Small Fiber Neuropathy
- Ataxia (R27.0)
- Tremor (R25.1)
Although several diagnoses have been documented, it remains unclear why my condition continues to deteriorate, what underlying mechanism is driving this progression, and how it can be effectively stopped.
Paresthesias are increasingly developing into numbness, which now affects more and more areas of my body, including my face, forehead, nose, back of the head, mouth, tongue, and other parts of the body.
The sensory disturbances and increasing numbness have become so distressing that I have to apply heat patches to several areas of my body at night, and increasingly during the day as well, to make the symptoms at least somewhat bearable.
Particularly unusual are the diagnosed Harlequin syndrome with pronounced neurological and autonomic asymmetry, as well as an extremely rare movement-dependent neuro-autonomic feedback disorder. Even slight head movements can immediately trigger markedly asymmetrical neurological and autonomic reactions, including goosebumps, chills, internal vibrations, tremor, circulatory reactions, and spasms in the neck and jaw.
During some episodes, my face becomes visibly distorted and asymmetrical, making it appear as though I have suffered a stroke.
This movement-triggered asymmetry and feedback disorder are considered extremely rare. Several of the neurologists involved have never encountered this combination of symptoms and reactions in this form before.
I continue to struggle every hour with near-constant tremors, severe paresthesias, progressive numbness, ataxia, and worsening neurological reactions.
I was treated in Israel and subsequently underwent further evaluation and treatment at Bangkok Hospital in Thailand. Despite numerous examinations and treatment attempts in Germany, Israel, and Thailand, the complete underlying mechanism has not yet been clarified and the progression has not been stopped.
We are now urgently trying to arrange admission or transfer to a specialized neurological or rare-disease facility in Asia or at another suitable location. We are particularly seeking access to:
- short-term inpatient admission or a comprehensive multidisciplinary case review
- highly specialized neurological or rare-disease centers
- suitable clinical trials or research programs
- compassionate-use or expanded-access options
- innovative diagnostic and therapeutic options
- N-of-1 approaches and individual treatment attempts
- regenerative and off-label treatment approaches
We are particularly looking for centers in South Korea, Japan, Singapore, Taiwan, India, and other countries that may still be willing to investigate and treat an exceptionally rare and progressive case when other neurological institutions have reached the limits of what they can offer.
My primary goal is to gain urgent access to further clinical evaluation and possible treatment. Any introduction or referral to a specialized neurological or rare-disease center, research program, clinical trial, compassionate-use pathway, or organization able to assist with access to care could be decisive.
