saw Dr Massa in a productive conversational back and forth.
he explained how hydroxyzine is okay for now, not long-term and confirmed whatever extra symptoms it causes are temporary, they roll off later. explained why trazodone is another good option to calm down all systems incl BP spiking to sleep etc.
he said I look better in the face and movement appears looser than last visit so thought the Rasagiline was working. so, either i'm having a good day or he may say that to many to see what the response will be. I said, ive been taking it 3 weeks (since 3/17) and so far and it feels the same to me (if anything, maybe slightly more anxiety).
so he launched into an exam, then he explained why it makes sense to try putting me on a therapeutic and diagnostic low dose of levodopa the 40+ year PD gold standard which, he says, would feel noticeably different if I have PD or not different at all if I don't. and if it isn't doing wonders you just stop the drug, 'no harm' (low harm low risk).
Rasagiline is a milder therapeutic and diagnostic and after 3 weeks I'm not yet feeling different, but he would be very surprised if Levodopa didn't work as he is confident its PD.
I asked about a test to get a dopamine baseline ex a blood test. he said blood dopamine doesn't matter, it's brain dopamine we are concerned about and there are no such tests.
he said we could do a DAT which is a one-time PET test that doesn't measure levels, it only validates that there is a dopamine problem or there is not aka pass/fail. he would be very surprised if there was no problem, but is open to do the test if that would make me feel better in moving forward, said he wouldn't take it personally if I wanted extra validation, said he himself would take it.
he explained how hydroxyzine is okay for now, not long-term and confirmed whatever extra symptoms it causes are temporary, they roll off later. explained why trazodone is another good option to calm down all systems incl BP spiking to sleep etc.
he said I look better in the face and movement appears looser than last visit so thought the Rasagiline was working. so, either i'm having a good day or he may say that to many to see what the response will be. I said, ive been taking it 3 weeks (since 3/17) and so far and it feels the same to me (if anything, maybe slightly more anxiety).
so he launched into an exam, then he explained why it makes sense to try putting me on a therapeutic and diagnostic low dose of levodopa the 40+ year PD gold standard which, he says, would feel noticeably different if I have PD or not different at all if I don't. and if it isn't doing wonders you just stop the drug, 'no harm' (low harm low risk).
Rasagiline is a milder therapeutic and diagnostic and after 3 weeks I'm not yet feeling different, but he would be very surprised if Levodopa didn't work as he is confident its PD.
I asked about a test to get a dopamine baseline ex a blood test. he said blood dopamine doesn't matter, it's brain dopamine we are concerned about and there are no such tests.
he said we could do a DAT which is a one-time PET test that doesn't measure levels, it only validates that there is a dopamine problem or there is not aka pass/fail. he would be very surprised if there was no problem, but is open to do the test if that would make me feel better in moving forward, said he wouldn't take it personally if I wanted extra validation, said he himself would take it.
I said: yes, it feels better to have a validated baseline before starting medication/treatment. so he aims to line up the DAT in 6 weeks, if insurance pays for it, then based on the test either start the levodopa or go back to the drawing board.
as to anxiety and sleep, we would deal with replacing hydroxyzine (with trazodone) if you need anything after 6 weeks on levodopa. he asked about my episodic blood pressure spiking so i described it (forgot to focus on pain, cramps, muscle tension which affect sleep as a package) and he asked whether I've seen a psych for anxiety.
i said no and explained the anxiety isn't originating in my mind, it's system stress in my body, it's physical in nature, a byproduct of wonky nerve signals. he agreed that the origin is physical not mental, from physiological stress, not from worry about nuclear war, then explained (off the record) that psychs don't distinguish by origin, in both cases they treat the symptoms the same way.
i have 2-3 'integrative' or 'forensic' psychs in mind that treat with vitamins first, Rx last, but like kate, they wont be covered by my insurance and none live nearby so it would be entirely telehealth. I'd prefer to try that approach for the first year.
dr massa asked about past symptoms...
my 2017 symptoms that had me first visit neurology (who found nothing): 15 min 'wiped out' energy spells, sweat spells, high heart rate, dizzy spells, spiking-BP spells and throat choker sensation for no apparent reason (atop hot cold and numbing neuropathies).
my 2019 neuro visit, after zapping limbs he established I had nerve damage aka neuropathy and noted hairless shins as a clue.
at one point, he asked if I have sweat anomalies. I said i have waxy spots of skin (sweat gland buildup) 10+ years on my scalp, behind the ears, now spreading to my face, neck and chest, it flakes off into my eyebrows and eyelashes and onto all my clothes.
I also noted that since 2012 I've been putting a Kleenex in my underpants to absorb extra dribble that occurs while walking/sitting (moreso since 2021) and given this type of urinary incontinence is a PD symptom this alone would indicate at least 10 years.
I may have mentioned a few 06 symptoms (ex weakness, low energy and feeling wiped out for no reason, numbing), so he surmised I've been dealing with this for 10+ years which may have helped him arrive at the stronger levodopa suggestion.
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