The road to diagnosis of Parkinson’s disease has been a long journey consisting of several previous doctors and many exams dating back over the past five years.
Earlier in the journey leading up to my diagnosis, some of the doctors that I had seen (many by referral from one baffled doctor to another) had suspected that I might have MS, or something as serious as a brain tumor, and they were subsequently concerned, as well as motivated to do thorough lab testing and examinations. After many of these medical specialists were unable to determine what was going on (following their examinations and medical tests) they were very dismissive of me (I remember a couple of them being downright rude). On occasion, I was treated as if I had been making things up – or they wanted to get rid of me as soon as possible, probably because they were totally baffled and because it was easier for them to just move me along. I came to the point of being silent and suffering through symptoms. I also was at the point of dreading the thought of seeing any more doctors, but vowed that I would continue to go to a primary care physician to get things like refills on my acid reflux, cholesterol, and blood pressure medications.
I ended up seeing my movement disorder specialist by either chance, fate or luck. My previous primary care doctor had been on vacation at a time when I had a six month visit scheduled. The doctor’s office then scheduled me to see the nurse practitioner in lieu of the doctor in order for medication refills. At my visit, the nurse practitioner noticed a slight tremor – and then referred me to a neurologist. Because I had seen a neurologist in the past (at the beginning of my symptom exploration journey – and it didn’t go well), I was very reluctant to see any more specialists or doctors in general – like I said – I felt done with doctors. During the neurologist’s examination, he referred me to see a movement disorder specialist in his office (and actually brought in the movement disorder specialist during part of the examination so that he could show his colleague some things that he was observing in my walk, movements, etc.). Otherwise, had I not been referred to a movement disorder specialist, I would have probably continued on longer without a diagnosis.
I have since heard of many people having horrible experiences with physicians and was also surprised to learn of many people being referred to psychiatrists and/or psychotherapists on the suspicion of being overly somatic or hypochondriac – only to find out later that there was valuable time wasted (sometimes in terms of many years) without diagnosis and subsequent treatment – and each person later discovering that they had a treatable physical disease – and that the treatment for such could improve their quality of life.
Don’t get me wrong, there is great value in having a good psychotherapist – and I also know that it is easy for anyone (including myself) to look up his or her symptoms on the Internet and then convince oneself of having some serious horrific illness. I have even heard – actually read, that as many as 3-4% of people who seek and who are treated for Parkinson’s disease that actually have psychogenic Parkinson’s disease – in other words created in one’s mind subconsciously, as a result of stress or other psychiatric reasons) – which is what my previous primary care physician believed of me. However, my movement disorder specialist does not believe my illness to be psychogenic.
Being a former psychotherapist, I have found myself skeptically questioning myself and my diagnosis – this could be due to some difficulty with accepting my illness and what having a progressive illness means long term. I find myself wishing that I had something that wasn’t a chronic degenerative brain disease and hoping it to be entirely the result of being in a stressful life phase, or at least that my condition would not be progressive. However, I have many reasons (including some genetic tests) which support that I have the actual illness of Parkinson’s disease (including a recently updated thorough neurological examination). Even if the hypothetical event occurred – that my diagnosis was someday proven incorrect, I know that whatever I have going on has majorly negatively impacted my life. Thank goodness that my symptoms do respond to PD medications – at least to the extent that, on the medications I am able to remotely function, whereas prior to being on the medications, and between medications, I have trouble with basic things like walking adequately.
I can see why some people do not want to go see a doctor or why some people don’t trust physicians.
If you are on a diagnostic journey, be patient, as anything progressive eventually will show itself enough that other things can get ruled out. If you are suspected of having Parkinson’s and you don’t have a movement disorder specialists, and you are able to see one – please do.
It can also be scary when you have a disease that will be with you from here on out and know that it can be disturbing when you realize that you may have to depend on seeing doctors (as well as depend on others) for a lifetime of medical treatments. Hang in there! I am right here with you!