Quote:
Originally Posted by SmittyZ3M
Hi Lindy,
Thank you very much for your reply.
The information you provided is very concrete and makes complete sense.
It may sound odd, but the profession I work in is of a technical nature, and sometimes requires a great deal of equipment troublehsooting. As I have been reading about PD and the steps required to form a diagnosis, I often relate such a process to the technical troublehshooting process I often find myself performing as part of my job. I too perform tasks that "rule out" potential problems, which puts me one step closer to determining the cause and solution to particular problems. It sure sounds like forming a diagnosis of PD or PS is more-or-less a "troublehshooting" process and includes a plethora of "ruling out". Unfortunately with PD or PS we are working with people's health and lives, instead of equipment.
After I read your post, I thought back to some of the discussion points our neuro was speaking in regards to, and they are really starting to make sense. Since her symptoms are pointing in the direction of PD, the next step, including an analysis of the MRI, is to start taking the Carbidopa/Levodopa to see how my mother reacts. If her condition "gets better", we are one step closer to a PD diagnosis. If her symptoms remain the same, we have decreased the probability of a PD diagnosis, and we start looking at other potential issues.
I must say that after joining this forum, in addition to other readings, I have faith in the neuro that we are seeing. Over the years I have come to lose trust in the integrity of certain doctors, but in this case, I am trying to remain optimistic.
Whatever the case ends up being, I can only hope that the medications and treatments available will help in providing her the ability to live the life that she is used to living.
Thanks again for the reply and support.
Matthew
|
Matthew,
You've come to the right place for information; your mother is very fortunate to have you advocating for her and educating your family as she is evaluated and ultimately diagnosed one way or another, so she can start proper treatment.
What Lindy says is entirely true; what makes this diagnosis so frustrating is the lack of specificity. It is entirely possible to see seven different neurologists and end up with just as many opinions on PD or Parkinsonsism.
Quite honestly, I think in a very literal sense, it is possible to say that we all here have Parkinsonism. From my understanding, we are never definitively diagnosed with Idiopathic Parkinson's Disease until/unless we have an autopsy. Historically, IDP has been confirmed during autopsy with the presence of Lewy Bodies, basically monstrous, malformed protein clumps; essentially the hallmark of the neurodegenerative cascade that takes place. There are people diagnosed with PD who upon autopsy show no Lewy Bodies and technically do not have the disease, although they may sure looked like it when alive and indeed responded to levodopa therapy!
As Lindy says, largely it is a spectrum disorder, and many progressive neurologists are starting to see it as such. We may all experience different insults to the brain (think Muhammed Ali vs. Michael J. Fox), but end up manifesting the damage with the same cluster of symptoms. In people who end up with young onset disease, it is generally considered to be more genetic with an environmental trigger. In later onset, it is considered more environmental than genetic. For a recent study that shows alarming numbers implicating air pollution and pesticides as environmental triggers, see the following study conducted by the
University of Washington (St. Louis).
Pardon the digression, but we clamor for any epidemiological study we can find as they are scarce to non-existent. I just wanted to say that yes this fuzzy science in diagnosis and treatment is very frustrating. Hang in there, persist, ask lots of questions. It is good that you trust the doctor; I'm right there with you on general suspicion in their regard, and it's important that you feel you are working with an expert who has your mother's best interest at heart. Do know that if it is PD, she should regain some sense of normalcy and enjoyment in things she once enjoyed.
Has she already started the levodopa trial? Have you or she noticed any improvements?
Laura