Best way to find out...Really - Parkinson's Movement

Parkinson's Movement
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Best way to find out...Really

Fredzu
Fredzu

I read of PD patients going to a GP and being told they may not have PD.

What is the best way to find out? Absolutely.

FJohn1

30 Replies
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You must die and have your brain examined to be absolutely sure. Otherwise you go to a good Neuro and believe what he or she tells you. Dat scans can help but not 100% accurate.

The Datscan will give you an indication of parsonism.....as it is I believe that Parkinson's should not be labeled with this title as it conjures up a set expectation of symptoms and treatments. I think it should just be labeled NEUROLOGICAL DISORDER. It allows more exploration of how to treat it...

Really what is Parkinson's? A list of 10 items(?) and if you have three you have Parkinson's????

Good one Bailey.

Now I will have a come back when someone tells me that I should have my brain examined.

That has already been taken care of.

Mine also several times, ha ha. Once they said it was so normal looking they could have calibrated the MRi with it. The irony, the irony.

Boyce3600
Boyce3600 in reply to BUZZ1397

What were Doctors' reasoning behind multiple MRIs?

BUZZ1397
BUZZ1397 in reply to Boyce3600

Neither were for PD. The second (the time they remarked on how perfect my brain looked) was for a spell of memory loss, they wanted to rule out cerebral insult. That was eventually labeled by my 1st neuro as probably an episode of transient global amnesia. Found out a few years later at a family reunion that transient global amnesia episodes have occurred to a couple of male relatives in my father's side of the family. The first one was after a bad whack from a car accident. Well it isn't irony, I misused that word. PD does not reveal itself on an MRI.

Boyce3600
Boyce3600 in reply to BUZZ1397

Interesting. My husband had something similar but neuro said naahh he isnt having TIAs. He is just anxious.

I say "similar to what you describe" but not truly sure what transient global amnesia symptoms are. With hubby, he "blanked out" for short time, then couldnt recall what he was about to do or who someone was..after few minutes it came back.

BUZZ1397
BUZZ1397 in reply to Boyce3600

During my episode I reportedly did what i was planning to do that day just do not remember doing it. Starting in the early afternoon it began, I got in the car went to a nursery bought a ornamental plant we had decided to pot and put out on some exterior stairs, drove home, potted it and put it where we had decided. I do not remember doing that. Then I apparently took a shower, put on my pajamas and sat on the sofa, in the dark. Note this was around 3PM. I was supposed to have picked up my wife from her mothers. When she called my cell on the sofa beside me I answered. I sounded too relaxed and was repeating my responses to her questions. That's the gist of transient global amnesia, you get in a loop as you forget you did what you just did or said. You do not do or say anything you wouldn't normally do or say. You just temporarily stop storing memory. Cut to the chase, she got a lift to come home and stayed with me me. After a couple of hours I came out of it and we pieced together some of what I wrote above using the receipts in my wallet. And i did a good job potting the ornamental. Just never remembered doing it. frightening that I drove a car during this isn't it?

Boyce3600
Boyce3600 in reply to BUZZ1397

Oh wow. Yes, it is frightening. So when u r in the act of doing you are aware, just not after it is over? You were so lucky u completed ur errand and were safe on ur couch. Thank u for the info. MRI did or did not show anything?

BUZZ1397
BUZZ1397 in reply to Boyce3600

Nothing. The images ruled out the usual suspects. That was the image they said looked like a perfect brain. Also did sono on my carotids and found them really open for a man my age. So...transient global amnesia

And?????

Hi HAL-9000, your reply went to me. I think you intended it for Bailey.

I still am getting use this site, thank you.

The standard test (before autopsy) is to give the patient levodopa. If it has a positive effect on symptoms, the diagnosis is likely Parkinson's.

Bazillion
Bazillion in reply to NanCyclist

Not all specialists do a levodopa challenge now especially if you are not going to start on that Medication.

thats how i realized i must have PD. 30 to 45 minutes after i pop my pill, tremors stop, or at least they usually do unless I am having one of those days!

That's what my GP did and the difference was miraculous. My first Neuro kept me on the Sinemet and added Azilect. My current Neuro said he would not had started me with Sinemet but would have used a dopamine agonists instead, but since I'm doing good on the Sinemet he doesn't want to change now.

I applaud this questions and these answers. Neuroscience is still primitive guesswork regarding Parkinson's and related movement disorders. I was diagnosed 6 years with P by Mt. Sinai in NYC, then went through years of scans, medications, and changes to diagnosis. Some doctors were competent, a few were glaringly incompetent. None admitted, at any point, the actual state of the science, or the approximations of their subjective, points-based diagnostic methods.

I chased the etiology, a bad mistake it turns out with Parkinson's, given the myriad of symptoms, and possible causes. I found that the best way for me was to stop trying to pin down what it was, reduce the drugs (especially if you are early onset), improve my health, learn from physical therapy how to minimize the gait and balance aspects, add "counter-movement" activities (walking, dance, Tai Chi, gardening). I also went forward with counseling for PTSD I had neglected to address for decades, which made important improvements in how I exacerbated my tremors and other aspects.

So I am left with symptoms. I live with those, and find that most people adapt to or understand my shakes, funny walks, and hesitancies pretty well.

Most of the drugs and treatments are experimental. Most of them are geared toward symptom management, by self, family, or nursing homes/facilites. If you can make sacrifices in how you work and live, PD et al can be managed in part with non-medical treatments. I dread the day my symptoms worsen to the point when I have to get back on that merry-go-round.

NanCyclist
NanCyclist in reply to gcorrell

Nicely put gcorrell. I would point out that by the time the drugs are being prescribed, they are not considered experimental as they have gone through a rigorous FDA approval process. Since we don't know the causes of PD, the drugs are to treat symptoms rather than effect a cure. Often the doctor can diagnose the disease because the symptoms are obvious. When in doubt, seeing if the patient responds to levodopa is, in my understanding, still the most reliable indicator. Bazillion is correct in that not all diagnoses are made with levodopa.

gcorrell
gcorrell in reply to NanCyclist

Hi Nan. I appreciate your response and take your point about the FDA process. I responded well to levadopa but not to some other drugs. But my DatScan was "clinically marginal." Levadopa is a rough measure at best. My problem with treating symptoms has several aspects. This is not equivalent to treating the symptoms of the flu or a stomach ulcer. The measure for PD drugs, given the many diverse symptoms and issues, is odd: what dampens the visible symptoms without unacceptable short-term harm to the patient? I don't fault this approach for severe, incapacitating PD. But that's not where most of us start. By giving us powerful brain medications that mask or dampen symptoms we kick the can down the street, as it were, and patients learn nothing about behavior or lifestyle changes that might have modest but important impact on symptomatic behavior. Worse, it adds whole new symptoms and problems to have to adapt to, caused by the meds, some severe. The mental confusion and frustration experienced under drugs like Sinemet, Azilect, Mirapex, Emsam et al alter the personality, and can lead to drug-induced (tardive) movement disorders.

I am not antidrug. I am urging going slow, learning all you can from the disease and how you can adapt and cope and calm the symptoms FIRST, before chasing the etiology with Levadopa, or masking it with any other drug. Anecdotally, based on comments in these forums, I am not alone in reacting to my initial diagnosis with panic and anxiety that contributed to to the symptoms. Doctors need to help patients manage the first few years with care and information, not just doses and trials.

NanCyclist
NanCyclist in reply to gcorrell

I think you're on the right track. My diagnosis was so clear that I didn't start Sinemet until 5 or 6 years into the process. I went nuts on Mirapax and it wasn't until I took control over my body through cycling and other exercise that my symptoms came under control. As Pam Quinn, the dancer, says, "the medications allow your body to move so you can do the exercises that reduce the symptoms" (not a direct quote, but the idea is that by combining medicine and exercise, we are likely to maximize the benefits to our health. Oddly enough, nine years into diagnosis I am stronger and more symptom free than I was when I started. I ride my bike at 80-90 rpm for at least an hour probably 4-5 days each week. I dance, do Tai Chi, hike, give talks, meet with other PwPs and participate in clinical trials. I also read books not about PD and engage in many non-illness related activities. I expect all those things help...for me anyway.

Fredzu
Fredzu in reply to NanCyclist

Well Done!

S70AWD
S70AWD in reply to NanCyclist

How can you do all that and still have a job?

hopedope
hopedope in reply to NanCyclist

I think all that you are doing helps too. I wish my husband liked to dance so I could add that to my list--but I do sometimes do dance moves by myself to the Music Videos in my bookmarked computer favorites list.

Maxkas
Maxkas in reply to gcorrell

I am reading an interesting book on alternatives to starting strong PD Meds

Brain Storm

Jon PLfreman

Written by a journalist who studied PD pts prior to being diagnosed with PD himself

Pelley
Pelley in reply to NanCyclist

I am not anti drug by any extent of imagination. I am slightly humored by NanCyclists mention of the "rigorous FDA approval process".

This is the same FDA that drags its own feet with many experimental drugs backed by reams of documentation and prestigious Neuros as well as the MJF foundation. The same FDA that can "approve" new swine flu vaccine (that netted the government branch and pharma companies $$billlions in revenue) within a year without protocols or genetic testing.

I wonder what the next generation with mutated sixth toe will blame it on??

This is the same FDA that allows first vaccines for infants combined into a cocktail so strong as to promote investigations into Autism spectrums?

Multi-vaccines bound together with a peanut/soy based binder and injected into a heathly toddler with documented changes not to mention the peanut allergy thing. How many of us 60 + remember not having a peanut butter and jelly sandwich in your school lunch bag? Now you can't bring a jar of pnut butter any closer to a school grounds than Cannnibus!

OMG sorry, Just struck a nerve. Don't get me started! :-)

PDWife60
PDWife60 in reply to gcorrell

You sound very much like my husband. I wish you all the best.

I'm 71 and retired from the University of Washington so I don't have a paying job. But I work really hard anyway.

Mike is about 20 yrs in now. Has had DBS (while still working) and finally retired and is still active and takes more Rx than we wish. But is is bigger than most (6'5", 275 for years). Knee surgery stopped his driving too, as well as inability to move from gas to brake pedal fast enought, in an emergency. He is always working on a project. Most of you have seen the video our health insurance company made, as part of a commercial. Google YouTube, Cancer, Parkinsons, Millers to view. I wish I could be a whisper in his ear, when I am at work, to go take a rest....He is OCD about finishing each project. I wish I could post a picture, other than the little trailer that is his profile. He has one more (#15 he has to finish before ???)

I loved the posts about exercising replacing needs for RX. Just did not work for Mike.

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