the scan shows that i am not lacking dopamine producing cells and that i am still producing my own dopamine. yet, there is deficiancy in the amount of dopamine showing to be equivalent to an early stage 2.. apparently in my type of pdism, i am not producing an adequate amount of dopamine not due to a lack of brain cells, rather a region that got damaged during my bouts of encephalitis and menangitis is doing some type of mis-firing. hense, the lack of dopamine and the wild swings and dyskenias.

they are doing several things. first, to eleviate some of this horrible pain, they have temporarally put me on tremaral. this is the first med i tried that actually helps.this pain. secondly, they are weaning me off of artane as this med brings on more dyskenesias. third, i am switching from my mirapex doses during the day to one dose of mirapex cr before bed. this is also to aid in reducing the dyskenias. thiis will be under my belt for 2 weeks until i see the docs. at that appt, we begin the discussion of having the dbs redone and i begin meeting the rest of the dbs team.. this time the dbs will be done in the area of the brain associated with dyskenesias. they will also be addressing my high stress level and the wire that was left in my neck when they removed the previous dbs. they are onto something here.. i can feel it

Harley,

OMG what a weight must be lifted off your shoulders! How long have you suffered with this diagnosis/misdiagnosis crap; had DBS that was horrid...no we know why. Another reason why meds were suboptimal too. This angers me so much because it was not necessary and should have been done years ago! PD steals enough on its own, and in your case doctors just aided and abetted. Had not one of them ever talked about a PET scan?!!??!

This should be a big eye opener for us all. Not is there only compelling evidence that we all have different ways of getting here; not one of us may even share the same etiology and subsequently the same diagnosis. Harley it looks like has a secondary Parkinsonism. We know there is a growing number of monogenetic findings meaning we get PD just with a mutation. It can also be a result of just exposure to manganese or carbon monoxide or that cleaning chemical reported recently here. After reading of the latest info there being a potential vascular component, I started thinking I was going to design my own battery of diagnostics with first step being to pay for a damn PET scan if it bankrupts me. The only reason we are given this label is because insurance companies do not want to pay for PET scans. It has everything to do in keeping us in the dark because they make much more money keeping us on pills or having unnecessary surgeries.

No wonder we all have different progressions; widely varying med responses; weird attacks of paralysis involving electrolytes, genetic mutations, h. pylori related Parkinsonism, many of us may have dopa responsive dystonia. In the end I may just end up back in the idiopathic group, but at least I'll have the peace of mind in knowing with more certainty...

This is also further proof that the diagnosis of idiopathic PD should not exist; we should be pegged with Parkinsonism until the medical community gets its act together. We are far too complacent and complicit in all this; it goes on because we let it. Did you ever have someone tell you that people treat you the way you let them treat you- same thing going on with the way are treated as patients. We should all be demanding PET scans before any diagnosis is delivered to us and insurance company.

Let us know how it goes! It sounds like finally you have some on the ball doctors who can help you.

Best,

Laura

Conductor, Harley,
we can't help being complicit, we are ignorant when we come to PD and have to educate ourselves. so interesting to learn of someone who has what I am presuming to be substantia nigra cells, proved by datscan, and is nevertheless deficient in dopamine. Have to agree with conductor that no wonder they cannot make head or tail of things, there is a spectrum here, we can see it, wish they would admit to it......

Harley, I am hoping that this means that you get the improvement in quality of life you so need, and that finally something will work for you. Wishing you the best with this.

Lindy

Most of us are diagnosed by clinical observation anyway. If we had our own step-by-step flowchart or something similar to a detailed plant identification key, that might be interesting. A "stress-testing" approach might help compensate for lack of high dollar scanners.
Examples-
"Reactions to wheat proteins can mimic PD symptoms. To prepare for stress-testing for this variable, perform and record baseline measurements #3 (typing), #5 (balance), and #6 (sleep quality). Now you must avoid as much as possible all wheat products for one week. Then, run the test by eating bread until it comes out your ears. After one week of forced consumption, repeat the baseline."

27 years laura. over half my life.

i believe it is time for us to not only question the "idiopathic" dxd, but to remove the word from pd terminology. something has happened to create our physical problem and out of laziness in the medical profession the term was born. linking us all under an "atypical idiopathic pdism" umbrella is not going to help anybody except big pharma and the docs. there needs to be a more concrete foundation for us to build the rest of our lives on and since it is OUR life, it is OUR responsibility to pay attention to what is happening to OUR body. unless we pull our heads out of the sand, we will continue to sink in the quicksand of this stupid ambiguous dxd and suffer with meds side effects and interactions, useless surguries and emotional anguish of thinking we are living with something that progresses and has no cure.

after i researched TRUE parkinsons and compared notes of my symptoms to what the research showed, i knew something was different with my situation. when i owned parkiejam and visited many with pd and pdisms, i knew there were many others who also had symptoms too unique and different to fit into the pd mold. the medications prescribed to some people were horrifying, yet these "so-called" mds' were dishing them out in bucket loads. i was told by my own mds that sinemet can cause tremors (fast and fluttery, not slow pill-rolling) and can also cause muscle cramping. that is just one example.

it is time for this to all stop. there is now a scan out that can help determine what is truly going on in the basil ganglia area. if there is lack of dopamine, why? in my case there are no lack of brain cells and i am producing my own dopamine, so now they can try to find a true cause. it may take them awhile, but i have gone through 27 years of waiting for the truth so however long it takes, i will wait now with hope.

doctors are not Gods and the little amount of time they spend with their patient on a visit can no way give them the entire picture of what we deal with on a daily basis. there is something.. SOMETHING that is making our body do what it does. a dxd of atypical is absurd because there is no typical form of pd. idopathic is not acceptable. it is lazy. it is up to us to make our voices heard. i have been told i am a "troublesome" patient because i have argued from the beginning about the dxd. and now, 27 yrs later, they are finally listening to me. and now there is proof to back up my suspicions. hurrah and hurray!

if at all possible, get the daTscan. it is well worth it.

I often wonder whether they would gain some insight by studying the people who have atypical parkinsonism with as much effort as they do the people who fit the mold perfectly. Many of the studies eliminate the atypicals, just as they eliminate those already on medication.

I maintain that it is an arrogance to say that people will turn to their doctors without reason. Too many people get misdiagnosed right across the board. A little girl died of TB in my city. She had been to three different hospitals, had chest x-rays, tests, everything. She was 11 and was referred to a child psychologist. She died on the day of her appointment. If we go and ask for help with what is affecting us, then doctors should listen, and help us by becoming partners in tracking down what is wrong with us. I have hopes of participatory medicine, but I think we are going to have to work very hard to get it.

There was a very interesting article today:

http://www.guardian.co.uk/commentisf...research-error

People should not have to spend vast times of their lives trying to find out what is wrong with them. If it looks like parkinson (big picture that) , behaves like parkinson, then treat it as something on a parkinson spectrum, and treat the person with it with some respect for their concerns for their life. Don't try to fit us all into one hole, only a few will fit, and the rest don't get answers.

We are all too different. Yesterday I talked with someone who has classic pd, but is a poor responder to l-dopa...............

It would be great if they put their hands in the air and said, we can sometimes really see pd, very clearly, but we also had a lot of people who we think MAY have pd, we know they have SOMETHING, the picture is more fuzzy for us, but we will treat them in the best way we can until we have better answers, and every step of the way we will give them the best explanations we can find, and and counsel them on the best choices for leading their lives the best that is possible. And we will go slow on the medication, and be cautious, because the treatments are as difficult as the problem. Atypical is like saying, you don't fit our picture, go back to the wilderness again, search for another decade......

Datscan is not perfect, nothing is. It can give false negatives, I was told there is a 6% discrepancy. It doesn't diagnose. That is why it is mainly used to confirm a diagnosis when the picture is not clear. It doesn't rule out all the different types of parkinsonism, and they seem to be many. But it is a step in the right direction. One day soon they will be able to look at what is going on in your brain as it happens, see the flow of activity.... and the guesswork will become a lot less......

I hear you, Harley, that is a huge chunk of your life.

conductor,
i assume insurance companies want a "cure" as much we do. it's drug companies that make the money on prescriptions, not insurance companies. i'm sure insurance companies want every chronic disease cured, it would save them a fortune. they might have to charge less for premiums but they'd still make their profit.

but i think you are opening a can of worms with PET scans, they are expensive and i imagine some potential risk.

Soccertese,

PET scans are nothing new; they have been used here for many years only in research; the very reason they are costly is because they yet to be routinized. I don't see how we can say it is costly...in our case compared to what? Watching us screw in an imaginary lightbulb or walk up and down the hall. There might still be false readings as Lindy pointed out, but 6% is a far better margin of error than the 30% we have now. Getting this diagnosis is life altering, so I would think they would care to be a bit more assured that they are hitting the mark.

In determining who decides what, I think that insurance companies look to expert panels of doctor/researchers and professional orgs. who have established diagnostic parameters. The Lyme Disease patient community offers us a very timely example of what can go wrong with this model (see documentary Under Our Skin)The problems ensue when we have things like people presenting with chronic Lyme Disease and refused treatment with a longer term low dose antibiotic because a few "expert" doctors say that their symptoms are not real. Doctors who have dared defy their colleagues, and treated patients anyway were then mobbed by their peers and sued by none other than the insurance company! Just who is in control of our health?

I am assuming it is the insurance companies final call on what to cover. In the UK a PET scan is more routine in narrowing down to PD; not sure if it is done with everyone who is observed as possible PD. The point is there is safety in that it has been used for many years in Europe; as for cost, if EEUC national plans use the PET scan routinely, then cost isn't a big deal, I assume.

Besides in the end, it is not about wanting a cure or who profits but simply about having the capacity to make that margin of error shrink and not using it. It's not like we would need to scan everyone right from the gate, but maybe doctors should select patients based on conformity in presentation. Point is that Rick is right, by now they could have a little flowchart and say you deviate off course twice than you merit a PET scan. I believe that if we started to routinely scan people as step in diagnosis we would begin to note the error rate going up. That is a scary prospect for those who are in control because if those numbers start changing, then more of us may start questioning the status quo, and well, who cares if a few people slip through the cracks…it is merely a life sentence.

I would say that we already have an open can of worms so cannot see how selectively using PET scans will unleash further suffering...we may find a lot more happy new beginnings. The bigger question is who has more to lose in this? I honestly don't see how it could hurt us on a large scale when they can't even fall back on the ol' Lewey Body autopsy as a definitive diagnostic; when they start acknowledging there are some serious holes in their neurodegenerative toxic cascade with the maybe presence of Lewey Bodies

Hi Laura, Soccertese, and Harley too,

In the UK Datscan is not used routinely, though some hospitals may use it more than others. It is mostly used when clinical diagnosis is unclear. This is a problematic area, because once a person is treated, especially with ldopa, that changes the initial observations. In other words, the patient presents differently. This can cloud the diagnostic process. Tough on the neuro, but even tougher on the patient, especially the one who does not exhibit a classic tremor. At my hospital there was no headlong rush to use Datscan, it took a while. One of the reasons it is expensive is that the injectable they give you has to be specially prepared and has a very short life.

I do not think that it will replace good clinical observation. It is just another tool to help. Even Harley's scan results do not prove anything, except that her parkinson is not what is often called IPD. What it does do is confirm her own thoughts about her condition, and provide her and her doctors with a better picture of what is going on. I agree with everything she says about the idiopathic word - it doesn't describe what parkinson is or is not, it only tells you that it is an unknown. It is also a pretty ugly sounding word that people could reinterpret any way they wanted, and might lead to negative connotations, regardless of it's true meaning. It could easily be dropped if there was a more flexible 'spectrum' approach, where we were assessed and placed at a point on a lateral scale, and the place on the scale could be refined or adjusted as both our MDS/neuro and ourself got better at understanding the way we present. It is also a practical, cost effective way to determine who would need to have a datcan; those who veered too far away to easily diagnose would be identified.