So I saw my supposed 'top' neuro/MDS specialist at Cedars-Sinai ... I KNOW I have 'early PD' ...
Dumb doc said this to me after the exam:
"The good news is that you don't have Parkinson. The bad news is that you don't have Parkinson."
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
He went on to say that at my age (70) I "could" develop PD. Even though I brought to this first appointment ... over 20 pages of DETAILS about my PD symptoms (thousands of internal tremors daily -- everywhere... face... eyes...arms; cramping in feet and legs...) ... He IGNORED all of that.
He also IGNORED my printed reports of '3' new methods to detect PD!
So of course he ordered blood work and offered me a datScan but said it was unlikely to offer proof of any PD (so I declined the offer).
Here's more on a 3 minute, NON-invasive... fast... cheap... RELIABLE way to detect PD!
THANK YOU! that's a great post! My own damn neuro/MDS never mentioned this and rejected '3' other newly created tests for PD ... That's why i ignored his blood tests recommendations. I have to find another, better informed doc.
i asked my movement disorder neuro if she was familiar with this test. she said she is knowledgeable of it but doesnt often use it. i guess its more for cases that are not forthright. my friend had it done bcuz her doc doubted she had PD, so used this and came back that she did have it. It ended a lot of anxiety for her as to what she had and how she should proceed.
It is not in the financial interests of big pharma or the medical profession to find a cure for anything that does not kill us. Have you noticed that cures or vaccines were found for HIV, COVID 19, MERS, SARS, Polio and many other killer diseases, within months of them appearing? Strange, isn't it?
Why cure something that does not kill us, it is far more lucrative to spend money on looking for treatments for chronic illnesses. Yes, they do say that the treatment MIGHT POSSIBLY be a cure but that is only pie in the sky.
There is only one way proven to reverse the symptoms of PD and that is High Energy Aerobic Exercise, in other words, FAST WALKING. Most of us can still walk and if they start to walk as fast as they can for as long as they can, then they can all get up to one hour, three times a week. That is all they have to do to live a normal life again. Even if you can only walk for a few minutes, every second day and slowly build it up to one hour, every second day, you will start living a normal life again, as I have soince1998 (22 years).
Global estimates in 2019 showed over 8.5 million individuals with PD. Current estimates suggest that, in 2019, PD resulted in 5.8 million disability-adjusted life years, an increase of 81% since 2000, and caused 329 000 deaths, an increase of over 100% since 2000.
beg to differ... that's like saying people don't die from cancer ... they die 'with' cancer... or 'with' heart disease etc etc etc -- we all know that disease CAUSES us to be sick... or causes us to die... So those of us who die 'with' PD (unless there are co-morbities) ... die from what PD did to us... I researched this over a year ago... Do you know the #1 way that people die 'from' PD? ... They choke to death because their lungs drown in fluid they can't get rid of... pretty damn ugly
"Patients with PD are at an increased risk of aspiration pneumonia, and approximately two-thirds of the patients die within a year after experiencing aspiration pneumonia. Mar 23, 2021"
After what the Doc. told you, about the good and bad news meaning that you don’t have PD, did you ask him, ‘Well, then, what is causing the cramping, and tremors, everywhere, in your opinion?” There must be a reason why those symptoms are appearing. Maybe you should get the test/s suggested, in the links! It doesn’t hurt to go to another Doctor! I check credentials of all the Docs I see! That has proven to be very helpful, to me! Good luck!
i was so completely FLABERGHASTED and DUMBFOUNDED by his answer... i was quite literally... speechless (hard to do for me, LOL)
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he did say he could be 'wrong' a couple of times in his 'speech' and he did order blood work (which for now, i've said F**** it ... and he gave me the option to have a datScan ...ditto on my rejection)...
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But could imagine ANY doctor EVER saying:
"The good news is that you don't have CANCER. The bad news is that you don't have CANCER."
I totally agree! I have several more ‘horror’ stories to tell, about being poorly treated by Docs, but I digress! It’s not helpful to go there! I feel uneasy even going to Docs anymore, wondering if they have my best interests, in their minds, or do they just want this elderly man, off their backs, so to speak!
not in 'those words'... he said he's seen "thousands of PD" patients (HIGHLY unlikely given that he looks like he's in his 30s) and my condition, as presented in his exam ... would be very rare to be PD... he said... but twice he said he could be mistaken ...
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but when i gave him print-outs of two new methods to detect PD without invasive or blood work... he was very dismissive of it.... so now i have to 'live' with what i believe is early PD ... and a very dumb and disinterested doc
I know about the Syn-One test and the Swab Test, but what is the third test? Also, the swab test is in the UK, and I am in US. Do they process tests out of the UK?
i forgot to answer part of your post...Nope... i NEVER want meds...
In my entire life I've never tasted alcohol... never had a single "recreational drug" ... never had a puff of a cigarette... I was a vegetarian for 27 years (until i turned 60 years old -- I'm 70 now)...
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I already knew from studying PD for over a year that the doc had no 'tools in his bag' to stop the progression... or even slow it down... We all know that...
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But i wanted to establish a 'baseline appointment' ... and have the 'connection' to an MDS ... It took me almost '3' months to get in to see this guy...
Now i'm wishing I went to a different doc... and I still might...
The doc knows you aren't going to take the drugs he prescribes, he's cherry picking his patients. You want confirmation of your diagnosis. Which you should get, without bias. The first neurologist told me it's something, but it's not PD. Turns out I have ALS plus syndrome. Can you imagine what would have happened if I said, I think I have ALS?! It took more than 3 years after that to get formally diagnosed and now I know that the first guy knew it was ALS. Once you're misdiagnosed, they circle the wagons and start covering for each other. Keep looking, you'll eventually find an ethical doctor.
I wish I had not started meds. I’m in a mess now. I need a new med to get off a med and will need a different med to deal with the damage the first med caused. 🙄 I’m furious about this.
I wanted confirmation of my self-diagnosis ... or ... at the very least... that his office had the latest diagnostic therapy tools ... and I showed him a print out about the University of Manchester that released (in England) in August, 2022 a 3 minute, non-invasive skin test... (just swabbing some skin cells) that has been HUGELY successful in accurately diagnosing PD... Plus I had two more 'early PD' non-invasive, cheap, accurate tests that were released in August from other researchers... My doc wasn't interested in those, either...
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I would have thought the doctor would have been THRILLED with hearing about this new diagnostic (and I was surprised that he had NOT heard about it!) ... but, sadly -- he just didn't care.
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Here's the new PD diagnostic that takes just 3 minutes and is HIGHLY accurate!
The problem is, I don't think any of those tests are beyond the research stage yet, meaning they are not commercially available. The Manchester paper says this:
"This breakthrough was confirmed in a PILOT STUDY...This COULD enable early, non-invasive diagnosis...etc. "
The blood test paper concludes this:
"Work still has to be done on refining the method to make it suitable for large-scale use. It remains unclear whether the test will also be able to pick up on the disease in the early stages..."
The Fierce Biotech concludes this:
"The method was “extremely laborious,” according to Crary, and not realistic for large-scale adoption...The hope, Crary said, is for the AI to one day be able to identify and diagnose Parkinson's..."
So though it might be nice for your MDS to keep up with this stuff (it drives me NUTS that I keep up with current research better than mine!) I'm not sure any of these can help you...right now, at least not in the mainstream. You could call the individual labs and find out whether they are looking for volunteers, I guess.
What is the Dr. looking for in your blood, BTW?
One very easy test is just to try levadopa for two weeks and see what it does. It doesn't mean you have to be on it after that (I'm not) but you can see how it affects you. It's a pretty decent way to see whether it's a dopamine shortage that's causing your symptoms...or not.
Also, why are you so opposed to a DaT scan? I had equivocal symptoms in the beginning and ultimately a DaT scan confirmed my diagnosis. It's not 100% but I'll bet none of those others will prove to be, either. Nothing ever is, no?
1. my doc thought i might have electrolyte deficiency (LOL)... and wanted blood tests for that... I brought with me a list of over 30 supplements that I take daily... (among my other 200 pages of data on a flash drive) ... Did he "ask" me if I'm taking potassium, calcium, magnesium, etc.? NOPE.
2. Thank you for your analysis of the current stage of those diagnostic tools... I didn't dig that deep... I thought they were available in England now... hmmmm
3. I understand that taking levodopa is the "ultimate diagnostic" for these dumb docs. If it works for you.... you got PD. If it doesn't... you don't. .... What a way to run our health programs! Let's operate and see if you got something!
I prefer (at this stage) to wait for the availability of one of these new non-invasive diagnostic treatments... including the one recently heralded by the Michael J. Fox Foundation.
4. Ditto for the DatScan ... I'm not crazy about the idea of being injected with iodine for 45 minutes only to take a test that my doctor said would be largely "inconclusive."
At this stage, I am 100% unaffected by my thousands of "internal" tremors. ... first started in June 2021 ... or maybe the year before when my eyelid tremors started. I've been to the ophthalmologist ... twice... and he said my vision is fine (another stuuuuupid doc). I showed him a print out of a research report that PD often starts with symptoms of tremors in the eyes. He ignored me and gave me "eye drops" (which I never took).
If you think I'm too negative about doctors... Here's the #1 reason...
A doctor "killed" my dad with an unnecessary test... Which later led to his need blood transfusions... From which he became infected with Hepatitis C ... They weren't screening for that in the 1980s.
I think your neurologist delivered a coded message to you! Why ? Who knows...He regrets that it is not PD which although it is incurable, it is nevertheless manageable; and he thinks you have another variety of Prkinsonian synd (SMS, PSP, Lewis body dementia, corticobasal degeneration), which are much more problematic conditions than pd.
and by the way, he scheduled me to come back in... 6 ... months to 'monitor' me... So if he thought I had something serious that had to be dealt with right away -- I think he would have told me... He said he thought my condition was related to lack of "electrolytes" -- which i seriously doubt since i take more than 30 supplements daily - including -- electrolytes
It is true that Medicine becomes, unfortunately, a commercial profession where sometimes, perhaps often I have no idea, profit becomes the rule, but from there to generalize, I do not think that is the case. It is the product of financial and free market globalization.
taking 30 supplements may not make you deficient in pretty much anything, but have you considered that it may knock some things out of balance in other ways? Like too much of things? From my experience with multitudes of supplements, I think I was trying so hard to supplement my Dopamine that I knocked other neurotransmitters (Serotonin, adrenaline and noradrenaline) out of balance due to these neurotransmitters competing for resources and their subsequent by-products. I'm down to just a daily Lithium Orotate, a weekly B1 and B12 and occasional Mg and I feel better than I had been on all the other stuff.
Not necessarily ! The bottom line is that diagnosing the origin of abnormal movements is very difficult even for the most experienced neurologists and it often takes much longer than you might imagine.
Same experience with my HWP two years in a row the director and movement specialist said he no PD. Wrote off his symptoms to lumbar pain (bad back) and poor sleep. Got a DatScan confirmed diagnosis, started meds. He thought he was going crazy and so did I. Saw a psychiatrist who immediately diagnosed PD (his father had it) and recommended Datscan and a new neuro. Said she was a "lazy doctor".
thank you for the feedback... at this point i did not do the blood work or the datScan that was offered... 1) I had a doc who seemed too disinterested and I lacked confidence in his judgement 2) even i'm dx'd with PD... there's nothing they can offer except "diet and exercise" ... I'm on day #257 of my O.M.A.D. diet (one meal a day eaten within a 90 minute window) -- gives my gut plenty of time to heal ... and I exercise as much as I can, time permitting ...
By the way, DatScan is expensive and insurance may be denied. I know quite a few people who thought they had PD and the DatScan confirmed. Blood work - doctors look for insufficient levels of Vitamin B's (mostly B6 and B12).
Hubby is on his 4th (? I think) neurologist. None of them believed in supplements of any kind. Not even the HB1 protocol, etc. Went to a movement disorder specialist neurologist and this dr was focused on healthy eating. Period. Many will not try new methods unless they've been tried and tested for centuries (I'm exaggerating).
Keep the faith. Try another doctor who you can relate to.
thanks for the good feeback... i have medicaid -- it covers the datScan... and i take over 30 supplements including 1.5 grams of B1 ... and all the Bs ...individually ...
as for finding a new doc... "driving distance" is keeping me locked-in with this guy ... we'll see what happens on my next appt in march
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