Hi, I am relatively new here too. I have multiple system atrophy (MSA), considered one of the Parkinson's Plus disorders, meaning that I have PD symptoms plus symptoms from other disease domains. In my case, I also have autonomic failure symptoms, like urinary retention (frequent inability to urinate), orthostatic hypotension (blood pressure falls drastically when I sit or stand), loss of heart rate variability, constipation, and swallowing problems.
While many PD sufferers also have one or more of these symptoms, at least 10% of those initially diagnosed with PD will later be discovered to have one of the PD Plus disorders, like MSA, Lewy Body Dementia, Cortico Basal Degeneration or Progressive Supranuclear Palsy. Unfortunately, a definitive diagnosis of these diseases can only be made upon autopsy, and is often mistaken for run-of-the-mill PD.
I think it is quite important for PD patients who develop a consistent set of "other" symptoms to be evaluated by neurologists and cardiologists and urologists to rule out these other disorders, as they have a much faster progression of symptoms, a much shorter life span, and must be treated much more aggressively than PD.
In fact, some of the medications typically used to treat PD may have little or no sustained effect for PD Plus patients. For example, I used ever-increasing amounts of Sinemet and ComTan for about 1 1/2 years, only to lose my dopamine responsiveness very quickly, even at mega-doses like 1000-1800 mgs of Sinemet and 100 mgs of Baclofen daily.
Some of the symptoms I have described can be primary symptoms of another disease or they can be side effects of the medications typically used to treat PD. For example, one side effect of Sinemet can be orthostatic hypotension (OH). OH can also be a primary symptom of Parkinson's Disease. And, severe, progressive OH can be a symptom of one or more of the PD Plus disorders. It is truly confusing, no?
One last thought about urinary retention and I promise to go back to lurking. Urinary retention often leads to repeated urinary tract infections (UTIs) as the urine remains in the bladder longer, breeding bacteria such as E. coli. These infections may not even show pronounced symptoms such as fever, pain or burning on urination, urinary frequency, because when the autonomic nervous system gets involved, it may diminish nerve sensation, such as feeling when the bladder becomes too full.
Autonomic dysfunction can also result in loss of body temperature control, making it hard for a patient to know when they are too hot or too cold, and can lead to diminished sweating ability. It is worth, IMHO, having a full complement of autonomic tests done in a regional academic research center, to be certain that PD is the problem, and to rule out several more malelovent disorders. The faster we learn what we have, the sooner we can treat it, even if treating it is primarily symptomatic. Quality of life is everything to patients, when quantity of life cannot be assured.
Sorry, but one more last thought. PD Plus disorders are usually diagnosed in men 2:1 over women, not so much because they are more prevalent in men, but again, IMHO, because one of the early presenting symptoms in neurodegenerative diseases in erectile dysfunction, and most men, who may not visit a physician for other minor maladies, will often seek treatment for ED.
Without a comparable early warning symptom, women's complaints of "I feel hot all the time", "Sometimes I can't pee", "I feel dizzy when I stand up", "My hands shake", and "I don't feel things during sex like I used to" may be chalked up to menopausal complaints, depression and anxiety, and psychological diagnoses such as a conversion disorder (in which one converts psychological distress into physical symptoms) to Munchausen syndrome (in which sufferers "invent" vague physiological complaints of unwellness in order to attract attention).
Women, and their advocates, such as husbands and partners, mothers and fathers, sisters and brothers, and sons and daughters, may have to be incredibly dogged (persistent?), absolutely certain of the validity of their loved ones' symptoms (pigheaded?), and confident (pit bull dog-like?) enough to find expert physicians who are competent to detect these rare neurodegenerative disorders.
Reenie