Should I be mad? Well, I'm stark-raving mad already. But how about angry? I don't think so. THINK ABOUT THIS! I have never known of any insurance company who let "Specialists" (like neurologistis) have total care for a patient or be their PCP (primary care provider). And why? Two reasons - Money and too specialized. A short visit with my neuro is $149.00 - and that's far less than an hour he spends with me, unless he wants to talk. They usually reserve an MD with Internal Medicine or Family Practice licensing to take over that duty (PCP). It makes sense, although I feel like I live with my neurologist (we do NOT have THAT close a relationship! lol)

Actually I have a wonderful neurologist - we share a great relationship and he has been through a LOT with me. But neurology is all he does - that narrows it down about a humongous number of subspecialities, such as: epilepsy, stroke, MS, muscular dystrophy, migraine, carpal tunnel, dementia, Alzheimer's, Huntington's disease, Wilson's disease, ADHD, aneurysm, dyslexia, brain tumor, ALS, Asperger's, Austism, diabetic neuropathy, coma, dystonia, pain management, ataxia, Myasthenia gravis, Meningitis, encephalitis, essential tremor, hydrocephalus, head or brain injury, sleep disorders (including insomnia, narcolepsy, etc.), Lyme disease, MSA, and PARKINSON'S. . . should I continue? Actually, here's a list of "conditions" covered by the title "Neurology." (from the NINDS website i.e. the National Institiute of Neurological Disorders and Stroke)
http://www.ninds.nih.gov/disorders/disorder_index.htm

I don't know if I am missing anything here, but if we start yelling for Neurology - then let's yell for Neurosurgeons, Rheumatologists, Otolaryngologists, Gynecologists, Urologists, Gastroenterologists, and others ad nauseum. PAN may know something I do not, so I hope they share with us.

And about the L-dopa (aka Sinemet) shortage, well . . . I have a theory on that one. My theory is not all that complex either. I plan to write something up on it and see if anybody will buy it (not literally).

My theory is just difficult to explain, and I will try, but t here are too many variables being considered here.The professionals say that there is a 2-week washout time after taking Sinemet. Do you know of any studies that make a patient do without their carbidopa/levodopa for 2 weeks? I think NOT! And why?? Because it could kill you (see Neuroleptic Malignant Syndrome defined below).

There is also a rebound effect when you stop taking your PD meds (agonists and L-dopa). That's what happens when we go "off" and become like an invalid because we failed to take our medication on time (for some, even 15 minutes makes a difference). Any study I've ever read about only ask for 12 hours without Sinemet. So what are the results? A rebound effect, and its severity is different for different people because your symptoms can be affected by a few things; like stress, sleep (or lack of), metabolism, what you ate the night before testing, any other pain or illness you may have (a sinus infection or a mild cold would fit here), and a number of other things. This rebound effect can be with dyskinesias (ofof dyskinesia) or without dyskiinesia - or akanesia - lack of movement). Herein lies t he placebo effect.

What I am saying is this - there is some kind of turn research is taking, and it had better turn, because they've been popping unknown substances, drilling holes in people's heads, and transplanting stuff foreignn to our bodies and have a measurment system that lacks any merit whatsoever.

I haven't even gotten to the meat of my theory yet, so here goes. Have researchers been measuring the stage of advancement of our Parkinson's disease, or the "off" rebound effect of 12 hours without medication, or are they just measuring how we think we feel (placebo effect). Are our "symtoms" actually symptoms or advancement of the disease itself?

I think we should be saving our energy and efforts toward getting an answer to these questions before we ask for our neurologists to get an incentive for primary care! That's just my ever so humble opinion. Oh, by the way - we won't get an answer anytime soon. Can you imagine what COULD happen as a result of admitting that the measurements we have used for the last 40 years for PD research aren't worth the paper they are written on??

I rest my case.

Peggy




From the NINDS website:
Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly.