every single thing I do now is a struggle taking 3x longer and all my energy/focus to accomplish incl sleeping, standing, eating, dressing, walking, driving, grooming, going to bathroom... so i saw a 3rd neurologist (below), updated medical directive, and will next find a disability lawyer to file the paperwork perfectly.
needed a 3rd opinion and on a tip from an article on the michael j. fox site and an old friend, i found a 'movement disorder specialist' neurologist, jumped through out-of-network referal hoops to see him on Nov 4, 2021.
it was a large new spacious office, he had a younger female dr in the room, took his time to listen and explain, it didn't feel rushed, felt very conversational without rushing through a list and left him the longer printed list behind.
I told him I had seen two neurologists in 4 years: one in '17 found nothing, then first diagnosis in '19 said it was poly neuropathy (alcohol-related), second diagnosis in '21 was leaning to Parkinson's, so needed 3rd opinion. both thought my 1-2 beers/wk was too much and that i've read Parkinson's can be diagnosed without MRI scans.
he started exam with basic questions like what's your full name, what is the date, who is the president which stumped me for a 2 seconds before answering correctly (Lesco Brandon came to mind), then how many fingers, follow my finger, finger to nose, etc and progressed to incl a gamut.
one test used a long blindfold-like material with alternating black and red stripes 3" wide and he had me look at it as he moved it vertically up and down and horizontally left to right, and pointed out to the young dr to 'watch his chin' (presumably the chin moved or shifted while looking at this). that was the oddest test.
after a thorough exam of my hands feet, joints, legs arms, gait down hall and back, he was comfortable saying it's not just neuropathy (and in no way alcohol related) but has key markers (features) of Parkinson's, so for now, he was comfortable calling it Parkinsonism (aka in the zone).
he clarified the MRI wasn't only to eliminate cancer/tumors and explained that because I'm under 65 with parkinsonism is why doctors call for MRI for clues into what is causing it (reasons/pathology) and to fine-tune the diagnosis. if they don't find anything more from the MRI then it's Idiopathic Parkinson's and given two clear CT scans in 2017+19 he does not expect to find any cancer/tumors.
at one point he asked the same question dr Karan did on two separate visits: 'how's your sense of smell... have you lost your sense of smell'? i said it's fine (but must assume it's pending in the future). by the end, he explained his write-up will look much like Dr Karan's.
he noted muscle stiffness, said I didn't blink much (signature), had me remove mask and step through more routines, saw some droopiness in the face so asked to see an old picture of me ex driver's license to compare.
Dr Massa was comfortable having me start Rasagiline now, a Parkinson's Rx, independent of MRI, to see if it works to reduce symptoms and improve quality of life 3 weeks later, says it's safe enough to try then noted side effects ex sudden drowsiness. he said these drugs reduce the symptoms and regain some QOL, but do not affect pathology aka Rx will make you feel better and allow you to do stuff, but heal aka a) there is no cure and b) Rx that can reduce symptoms comes with risk of creating new ones.
says the numb foot since 2006 sciatic attack could well relate to a pinched nerve in low back completely separate from all the rest and too much time passed to do anything about that.
while not advocating I drink a lot of alcohol, he wanted to note that even if I drank 10 beers a week it wouldn't relate to any of these issues; they have no relationship. thank god, had a beer with buddy jason the next day.
Dr Massa was comfortable having me start Rasagiline now, a Parkinson's Rx, independent of MRI, to see if it works to reduce symptoms and improve quality of life 3 weeks later, says it's safe enough to try then noted side effects ex sudden drowsiness. he said these drugs reduce the symptoms and regain some QOL, but do not affect pathology aka Rx will make you feel better and allow you to do stuff, but heal aka a) there is no cure and b) Rx that can reduce symptoms comes with risk of creating new ones.
says the numb foot since 2006 sciatic attack could well relate to a pinched nerve in low back completely separate from all the rest and too much time passed to do anything about that.
while not advocating I drink a lot of alcohol, he wanted to note that even if I drank 10 beers a week it wouldn't relate to any of these issues; they have no relationship. thank god, had a beer with buddy jason the next day.
he said a lot, and near the end I mentioned taking MTHFr supplements incl B6/B12, zinc, magnesium citrate and oxide (as needed lax) and he noted how one can cause x and the other can skew copper levels (wish I recorded it), then he ordered blood work incl zinc copper B12 B6 B1 to check. he knows a bit about MTHFR (likely as a skeptic) says it matters more if you had a blood clot, says it has no bearing on these issues or much else, asked how i even found out about MTHFr, i said after finding super high homocysteine levels.
Parkinson's vs Parkinsonism
Parkinsonism is any condition that causes a combination of the movement abnormalities seen in Parkinson's disease — such as tremor, slow movement, impaired speech or muscle stiffness — especially resulting from the loss of dopamine-containing nerve cells (neurons).
What is the difference between Parkinson's disease and Parkinsonism?
Parkinson's is caused mainly by the degeneration of nerve cells in the brain, while the causes of parkinsonism are numerous, ranging from the side effects of medications to chronic head traumas to metabolic diseases to toxins to neurological diseases.
Followup Q&A
in an email i asked followup questions and Dr. Massa answered:
- it's safe to call this parkinsonism for now, a more formal diagnosis can be made after the testing is complete.
- levodopa is an old drug with excellent safety data. It is more potent and needs to be taken 3 times a day.
- rasagiline has an excellent safety record as well and has been on the market for about 15 years.
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