I see so many people here on HU asking about their progression and if it's normal. I believe that PD is used as a garbage can when the diagnosis is uncertain and the patient demands and answer from the doctor. Later, when there is a poor response to drugs, people start to question their diagnosis. There is considerable overlap between non-genetic neurodegenerative diseases and it can be hard for the person to know.
This forum is a wonderful place to seek support and learn from the army of independent researchers on ways to improve our lives.
If something doesn't seem right, get another medical opinion - as many as necessary to feel confident that you know what you are dealing with.
This is my cautionary tale:
From my experience, early in the process of developing a neurological disorder there can be many symptoms that overlap with other diagnoses. My own symptoms included tremor in my hands, but not at rest. I now know the tremors are a result of muscle exhaustion. I lost my arm swing on the left side first, I now know this is due to shoulder muscle weakness. I developed muscle stiffness that I now know is spasticity. I began to lose my balance doing simple things like stepping into my shoes. My postureography was severely abnormal. I was told that I have ataxia, but not which type. My Romberg sign is positive, it's sensory ataxia. Balance testing showed I could catch myself falling forward but not backwards. This occurs when trying to sit down. My reflexes were brisk, then very brisk and now I have crossover reflexes, when the right patellar tendon is tapped the left leg responds. In Parkinson's disease and MSA the reflexes are normal. I have autonomic dysfunction, which occured early in my neurological disorder, whereas my mother who had a PD diagnosis, stated her dysautonomia happened much later. I had hypertrophy of muscles that looked like muscular dystrophy and I had fatigue that looked like myasthenia gravis. I didn't see fasciculations in my muscles at first, but when I learned what to look for, tongue fasciculations were obvious. My Hoffman sign and jaw jerk test were positive, but early on the neurologists didn't look. I developed a form of smell loss that is specific to the central limbic system and chemical sensitivity to solvents and fumes. I developed problems with what I thought was my depth perception. I now know it is not a vision issue it's a central processing disorder. This along with smell loss is a harbinger for dementia. I developed severe insomnia, I once didn't sleep for 48 hours, my polysomnography revealed that I didn't achieve REM sleep and I have central sleep apnea. I have shortness of breath and thought it was a heart problem, I now know that it is fatigue of my diaphragm. I had a 1.5T MRI, and a spinal tap that ruled out Multiple Sclerosis. I had a 3T DaTScan that showed *cerebral atrophy (abnormal for my age) but no substantia nigra degeneration. I aggressively and relentlessly pursued objective testing and diagnosis of each symptom after I was given the medical equivalent of the Scarlet Letter - a somatoform disorder diagnosis. The movement disorder specialist knew I didn't have Parkinson's disease. I requested a neuropsych evaluation to establish a baseline, I later learned that the datscan was being used in an effort to support a schizophrenia diagnosis, it was negative. I had genetic testing, the Mendelian Parkinson's genes were negative but for one missense mutation, ATP13A2 (Park9). I was told that all EMG/NCS, EEG and EKG tests were normal. I was told my muscle biopsy was normal. I was told my chest xray was normal. They couldn't find the cause of my neurological symptoms. I received my diagnosis in July, 4 years after developing symptoms of a neurological disorder (injury). I'm pretty advanced now, although doctors comment that it's not obvious.
Can you guess what my diagnosis is?
Leave your guess in the comments section. No cheating by looking at my other posts.