the short of it is that the MRI proved to be normal in relation to my age, but helped the doc rule out other Parkinsons-mimicking ailments and using validated diagnostic criteria he is now calling it PD.
I asked him about any tests that could help measure my dopamine levels, he noted only the DAT which is a CT with radioactive IV/drink. he said at this point in time would not show us anything of value, but is something we might do later on. Dr Karan wanted it last year, but I've read it isn't too reliable diagnostically in early stage, but would like to know my baseline levels.
i asked if there was any blood or urine test that one could take instead, and referenced the dopamine serum $100 test I found online that quest labs can do, he said "if there was, it would make his job much easier."
so it appears they don't need to know how much dopamine you have before they start to medicate you. inferred between the lines from his answer, Rasagiline may not aim to increase/antagonize dopamine production. will need to verify.
i asked if there was any blood or urine test that one could take instead, and referenced the dopamine serum $100 test I found online that quest labs can do, he said "if there was, it would make his job much easier."
so it appears they don't need to know how much dopamine you have before they start to medicate you. inferred between the lines from his answer, Rasagiline may not aim to increase/antagonize dopamine production. will need to verify.
the doc is trying to persuade me to start trying drug treatments, have me worry less about adverse reactions, said he hasn't yet seen any adverse reactions from patients on Rasagiline, but if I have a sudden sleep incident (without warning/drowsiness), we would immediately halt the drug. and next in line of good options for me in his view would be an older drug Amantidine, but he is advising Rasagiline as firstline.
when I asked what the Rx can do for me, he said it reduces tremors and stiffness, so I noted tremors are cosmetic and the least important hurdle, in my view.
i would like to know whether the Rx (rasagiline) can reduce the pain related to stiffness ex upper back/neck, reduce cramps, reduce loss of strength, reduce bathroom urges, the dribble and hints of incontinence, reduce the random swallowing errors when throat valve isn't closed causing choking and coughing fits, improve range of motion in my hips and shoulders and improve my balance so i can dress/undress without help, reduce sleep disruptions, reduce drool, reduce random finger flinching typing errors.
will this Rx (rasagiline) handle much of that or will i need other Rx for such symptoms as these bother me more than tremors?
i would like to know whether the Rx (rasagiline) can reduce the pain related to stiffness ex upper back/neck, reduce cramps, reduce loss of strength, reduce bathroom urges, the dribble and hints of incontinence, reduce the random swallowing errors when throat valve isn't closed causing choking and coughing fits, improve range of motion in my hips and shoulders and improve my balance so i can dress/undress without help, reduce sleep disruptions, reduce drool, reduce random finger flinching typing errors.
will this Rx (rasagiline) handle much of that or will i need other Rx for such symptoms as these bother me more than tremors?
he didn't have much of an answer on the phone except to recommend physiotherapy for dealing with gait-related posture hurdles, so had to followup by email 5 days later.
dr massa made it clear in the first exam that he could only offer 'feel good' medicine that reduces symptoms as there is no curative medicine that can alter the pathology.
in my directive, i prefer curative medicine but know 'cures' are super rare, so i am open to comfort medicine that ease pain/difficulties ex painkillers, not too open to much else allopathic, but very open to functional medicine incl hormone/enzyme and bioelectric therapies (ex vibration/sonar/laser).
---------- Dec 12, 2021
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 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.
i had to highlight my concern with frequent urges to pee every 45-90min (disrupting sleep) even with near empty bladder, 5 second weak stream then 60 seconds dribble, stuffing a kleenex in shorts to absorb extra dribble since 2012, worried of hints of incontinence by end of next year.
he started exam with basic questions like what's your full name, what is the date, who is the president which stumped me for 2 seconds before answering correctly (Lesco Brandon came to mind), 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 assume it's something on the horizon). 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 (ex downturned edges of mouth) so asked to see an old picture of me ex driver's license to compare and confirm.
Dr Massa was comfortable see me start Rasagiline asap, 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 thus regain some QOL, but do not affect pathology aka Rx will help you 'feel better', reduce tremors/stiffness, but there is no cure that can alter the course of disease.
Dr Massa was comfortable see me start Rasagiline asap, 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 thus regain some QOL, but do not affect pathology aka Rx will help you 'feel better', reduce tremors/stiffness, but there is no cure that can alter the course of disease.
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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