[Conductor71]

Hi all,

I have been trying to figure a way to get my life back after being diagnosed with PD for 5 years and then being undiagnosed by NIH doctors upon being assessed for inclusion in the GDNF trial. I was actually disappointed when they told me that I did not have idiopathic disease because then what do I have? Within 2 weeks of returning home, I had a DATscan which was abnormal with low striatal dopamine uptake primarily on one hemisphere. The report stated that "molecular imaging evidence of nigostriatal degeneration. This can be seen with Parkinson Disease or related neurodegenerative disorders."

So I don't have idiopathic PD, yet they tell me I have neurodegeneration. How do they know this without any sort of baseline comparison from when I was first diagnosed? They can't know. There is now a study showing that we actually have higher dopamine uptake depending on what season it is! Really this whole thing is such a joke. Then the bill arrived for the DATscan. They expect me to pay $8000 for nothing. It is laughable.

What do I do now? My neurologist has a chip on his shoulder because I went to the NIH in the first place. The NIH docs do not feel I meet strict enough criteria for PD; they won't even respond to my emails despite the DATscan results. I find myself asking is there anyone who cares at all? Of course not, everyone is busy chasing around biomarkers for a disease that doesn't exist.

This is my take away from the examining NIH doctor. She confirmed that there are many different conditions that manifest or evolve to look like PD. How do they know without genetic testing and lab workups that we don't have something else? I really believe we all share a set of symptoms because our brain has been impacted somehow into throwing our catecholamine neurotransmitters out of whack. The end. There is no one "thing" that we all share as a trigger or cause, but we do end up in with brain inflammation that results in the cardinal signs. The establishment surely is not going to pay for all kinds of testing, so it is easier to lump us all together under a disease entity that is so variable that it defies classification as such.

I am now determined to narrow down what I do have, and thank goodness my primary care doc is an intelligent, curious, compassionate person who readily acknowledges the profound shortcomings of Allopathic medicine. She knew upon first meeting me that I was manic from agonists and is the only doctor to comprehensively screen me for any other possible condition. Really the clinical practice of neurology is still in the dark ages.

She recently suggested that I test for mutations in the MTHFR gene because it can result in problems with B vitamin metabolism and that can look like PD. Lo and behold, there are some SNPS relating to metabolism of BH4, an enzyme, which is essential to a normal healthy balance of PD relevant neurotransmitters. In fact, it as enzyme in the step of making both dopamine and norepinephrine; the two biggest players in this game of name that invented disease called PD. I have a few mutations that suggest I may have diminished levels of BH4. Interestingly enough, this is treated by taking levodopa according to research. It leaves me wondering if this is why that alternative amino acid building protocol is successful for some and not others?

These mutations may mean nothing and sorry to blather on. I have just given up on traditional medicine as they gave up on me upon diagnosis. I have had enough. I just hope to encourage some out there to not stop asking questions and seeking the truth or core of what is wrong. The more of us who do this the sooner researchers and doctors will acknowledge they don't have all the answers and that patients are essential to actually turn what is now a stab in the dark into a truly scientific process.

[reverett123]

I am writing this to multiple audiences and will seem to slip in and out of proper tense. Since Laura is a librarian this may bother her and I will apologize in advance. The rest of us will have to adapt.

We reside in a hidden corner of medicine whose very existence is denied. It is the garret of Dickens' London where the embarrassing old aunt is tucked away in hopes that she will not moan loudly enough to disturb the guests at tea. Our very existence puts the lie to the tissue that covers her dessicated body. No, barring serendipity, there is not going to be a cure in our lifetime. That is just to keep us quiet. To avoid rocking the boat and to keep the grants, the Pharma money, and the Black Tie foundational glitter in place, they (and if you don't know who "they" are then you are probably reading the wrong post) carefully craft a system that sorts the Michael J. Fox's from the herd so that they can be carefully milked while their fellows are dying. There were dark mutterings even then as the "respectable" research community closed ranks around MJF's wallet. Of course there was no funding for wild eyed visionaries! That would be a waste! We already have all those answers! Don't worry your pretty little head! And if you can get people to put money into this tin cup, we will give you this beautiful simulated tulip (guaranteed not to stain the rug at our next fundraising gala!)

I am sorry if I sound bitter. No. Strike that. I AM bitter. So get over it. You see, I like Laura and all those like her, myself included. The ones who worked to get the job done. The ones who believed the lies even in elementary school - not because their truth was self evident but because they should have been. Because it should matter. Even when we found that the real world made it clear that a cheap bankster in an expensive suit was worth more than a thousand Lauras, we kept on believing in the quaint concept of what is right.

Yes, I like Laura, even though we've never met. But we have shared an enemy and that is a powerful glue. And, I hope that she will forgive my presumption, Laura is strained to the max. Precariously close to the breaking point. I can tell from reading just a few words. Because I speak the language myself. I know what the bedroom ceiling looks like at 2:00 AM. I know what it is to veer away from questions like "What will I do if...." because all the answers are horrid. She has a three year old child, for God's sake. She is also a librarian and an ace researcher. If the MJFF would tear its eyes away from the glitter for a moment and consider what good could be done with a simple reallocation of just a little funding away from the self-protection of the status quo and toward the wild-eyed visionaries, they could do far wore than put Laura in charge of it.

But the bitterness of Life swells up and cries, "There is no room at the inn."

Originally Posted by Conductor71

Hi all,

I have been trying to figure a way to get my life back after being diagnosed with PD for 5 years and then being undiagnosed by NIH doctors upon being assessed for inclusion in the GDNF trial. I was actually disappointed when they told me that I did not have idiopathic disease because then what do I have? Within 2 weeks of returning home, I had a DATscan which was abnormal with low striatal dopamine uptake primarily on one hemisphere. The report stated that "molecular imaging evidence of nigostriatal degeneration. This can be seen with Parkinson Disease or related neurodegenerative disorders."

So I don't have idiopathic PD, yet they tell me I have neurodegeneration. How do they know this without any sort of baseline comparison from when I was first diagnosed? They can't know. There is now a study showing that we actually have higher dopamine uptake depending on what season it is! Really this whole thing is such a joke. Then the bill arrived for the DATscan. They expect me to pay $8000 for nothing. It is laughable.

What do I do now? My neurologist has a chip on his shoulder because I went to the NIH in the first place. The NIH docs do not feel I meet strict enough criteria for PD; they won't even respond to my emails despite the DATscan results. I find myself asking is there anyone who cares at all? Of course not, everyone is busy chasing around biomarkers for a disease that doesn't exist.

This is my take away from the examining NIH doctor. She confirmed that there are many different conditions that manifest or evolve to look like PD. How do they know without genetic testing and lab workups that we don't have something else? I really believe we all share a set of symptoms because our brain has been impacted somehow into throwing our catecholamine neurotransmitters out of whack. The end. There is no one "thing" that we all share as a trigger or cause, but we do end up in with brain inflammation that results in the cardinal signs. The establishment surely is not going to pay for all kinds of testing, so it is easier to lump us all together under a disease entity that is so variable that it defies classification as such.

I am now determined to narrow down what I do have, and thank goodness my primary care doc is an intelligent, curious, compassionate person who readily acknowledges the profound shortcomings of Allopathic medicine. She knew upon first meeting me that I was manic from agonists and is the only doctor to comprehensively screen me for any other possible condition. Really the clinical practice of neurology is still in the dark ages.

She recently suggested that I test for mutations in the MTHFR gene because it can result in problems with B vitamin metabolism and that can look like PD. Lo and behold, there are some SNPS relating to metabolism of BH4, an enzyme, which is essential to a normal healthy balance of PD relevant neurotransmitters. In fact, it as enzyme in the step of making both dopamine and norepinephrine; the two biggest players in this game of name that invented disease called PD. I have a few mutations that suggest I may have diminished levels of BH4. Interestingly enough, this is treated by taking levodopa according to research. It leaves me wondering if this is why that alternative amino acid building protocol is successful for some and not others?

These mutations may mean nothing and sorry to blather on. I have just given up on traditional medicine as they gave up on me upon diagnosis. I have had enough. I just hope to encourage some out there to not stop asking questions and seeking the truth or core of what is wrong. The more of us who do this the sooner researchers and doctors will acknowledge they don't have all the answers and that patients are essential to actually turn what is now a stab in the dark into a truly scientific process.

[moondaughter]

when my husband had a stroke 8 years ago i told his neuro...you should study me...i can show you what unmedicated parkinsons looks like (no med history) with 11 years of shaking, rigidity, bradykinesia etc. He agreed but...."didn't have time."

imho we need a paradigm shift iin terms of our fundamental frame of reference - a shift away from the Newtonian reductionistic model that seeks the singular cure for illness created by a singular etiology whose patterns are
consistent across the whole demographic. Even a simple virus does not present the same amongst diff individuals - some will have an aching stomach, others vertigo yet others headaches all responding to the same insult. Chasing after "cures" using current western model is like diving into an eternal huge maze.

but we are dynamic by nature and I for one do experience fluctuations of sx with the seasons and why should that seem so incredulous? I take comfort in the possibility that i may not have "Parkinsons" ....let the prognosis be fluid! What i do fear is long term drug effects which may be more difficult to heal

want to heal? can't do it w/o evolving the integrity of how one lives....in my very humble opinion - the revolution starts within before it can be made manifest on a larger scale. We do have some heroes-some role models, people who are recovering- but they leave a rather obscure trail and its no wonder why when one witnesses the grilling they get from some on boards like these who sincerely seek to separate the grain from the chaffe yet are bitter...how dare they upset the apple cart huh??such naiive fools these skeptics will muse - but thiis snobbery can keep uus in the dark.

does this journey require that eventually we all must go through a self discovery process .....too (in order to be .....cured)? (if not then one must also accept a premise of chaos in nature ) -anyone here read Anita Moorjanis' (sp)
"Dying to be me"?

Rick in the past you have given us the yellow canary in the mine metaphor...whose mine are we in? those who would suppress the science and technology that would ultimately free us all? control the resources = control the people....indeed.

thanks to rick and laura for keeping it real !

[soccertese]

we all want to get better, how we get betterdoesn't matter if it works. before the internet, info on alternative treatments could be suppressed. pd info can't be suppressed now and the pd wheat will get seperated from the pd chaffe, noone on this board is keeping anyone with a verifiable and significant alternative pd treatment from getting attention, just the opposite, these posts get a terrific number of views, this forum seems to exist to allow alt ideas/treatments to be DISCUSSED.

i strongly disagree that the pd healthcare community is seeking just monolithic treatments, the whole emphasis on DNA analysis and biomarkers is to seek ways to identify the different forms of PD, just like with cancer so better treatments can be developed. My take is pd is a very tough nut to crack, hard to attract drug research money because it is such a complex disease, doesn't kill you quickly, younger people hid their pd and didn't get involved with clinical trials because it could affect their employment/insurance and carbidopa/levodopa worked so well and is so cheap plus any new therapies likely have to beat DBS makes it a less attractive disease to study, imagine if MJF didn't have PD for all those that bad mouth the MJFF.

it's not a perfect system but everything i read makes me think there's more chance of major breakthroughs than ever before.

just my opinion.

The healthcare system in the U.S. could be a lot better, that's obvious.

[moondaughter]

Originally Posted by soccertese

we all want to get better, how we get betterdoesn't matter if it works.

How do we know "what works" on a large scale w/o funding which is where our current system falls short - discussions aren't enough. The irony is that integrative and complimentary treatments could go a very long ways in saving the $$ those in control of them choose to invest elsewhere... - should medicine be a business and if so in what context- Altho this was written relative to the energy business there are relevant parallels...

I like the concept of "compassionate capitalism" . Its been said that when two paradigms collide, it is the one that has the capacity to absorb the other that will thrive - capitalism based on love rather than money - the business of business is not to make money.....rather the business of business is to enoble life ... a good model would be the jungle for example....an exquisite co-created biosphere - some current business practices do not serve this principal rather are on the track of desertification (is that a word?lol) of our planet! So how do we dev-elop leaders in organizations? Those that can recognize and promote collaborative movement where the "whole" is recognized. But this starts where there is conflict which serves the purpose of response-a response can be one where there is no winner or loser where one looks at not whether something is right or wrong but rather whether its working. One who takes a long term assessment of what truly is good for humanity-one where shareholders are not favored over the environment because ultimately they are not separate - rather than thinking in terms of trade offs compassionate capitalism strives to be creative -where we transcend the metrics of success usually defined in sole terms of profit. Take for example the happiness index of Bhutan. Altruism has to enter into business in some shape...our current economic model is based on unlimited consumption which is unsustainable.
-inspired by and with excerpts from Blaine Bartlett

[christie75]

Originally Posted by Conductor71

Hi all,

I have been trying to figure a way to get my life back after being diagnosed with PD for 5 years and then being undiagnosed by NIH doctors upon being assessed for inclusion in the GDNF trial. I was actually disappointed when they told me that I did not have idiopathic disease because then what do I have? Within 2 weeks of returning home, I had a DATscan which was abnormal with low striatal dopamine uptake primarily on one hemisphere. The report stated that "molecular imaging evidence of nigostriatal degeneration. This can be seen with Parkinson Disease or related neurodegenerative disorders."

So I don't have idiopathic PD, yet they tell me I have neurodegeneration. How do they know this without any sort of baseline comparison from when I was first diagnosed? They can't know. There is now a study showing that we actually have higher dopamine uptake depending on what season it is! Really this whole thing is such a joke. Then the bill arrived for the DATscan. They expect me to pay $8000 for nothing. It is laughable.

What do I do now? My neurologist has a chip on his shoulder because I went to the NIH in the first place. The NIH docs do not feel I meet strict enough criteria for PD; they won't even respond to my emails despite the DATscan results. I find myself asking is there anyone who cares at all? Of course not, everyone is busy chasing around biomarkers for a disease that doesn't exist.

Laura hi, we've "met" before in the NPF forum... I saw your recent posts yesterday and I was completely stunned by what you wrote about your experience with the NIH neuros. So, I registered today cause I really wanted to give you my own perspective on this issue, for what it's worth.

First, no doctor can, or should, for that matter, disregard the results of a Datscan ! Although it's neither 100% sensitive nor specific, false positive Datscan results are extremely rare, especially among patients with parkinsonism ! In my humble opinion, the positive Dat in your case confirms beyond any reasonable doubt the initial diagnosis of PD. Any other thought is soooooooooo far-fetched. I can only guess you don't have DRD (dopa-responsive dystonia-did they check you for this?). You don't have atypical parkinsonism (a PD-plus syndrome). Bottom line is the only logical interpretation of these results is you have PD. Which really should not come as such a big surprise 6 years into your diagnosis!

I read really carefully the opinions expressed by the NIH doctors. I'm no neurologist, but their case is very weak. And NOT supported by the objective findings of your DAT, which confirms the presence of degenerative-and NOT phychogenic!!!-parkinsonism. Most likely PD.

So, your tremors and freezing appeared during periods of intense emotional stress. So what? PD symptoms worsen with stress, we all know that. Doesn't mean a damn thing. Certainly doesn't mean your symptoms are psychogenic!So, you are asymptomatic on meds. Why did I think that an excellent response to levodopa is used to support a diagnosis of PD, not exclude it? !!

As for their argument that normal people can get dyskinesias...The only literature that supports this, is some experimental data on normal monkeys who developed dyskinesias after receiving VERY high levodopa doses. And some case reports. No hard evidence. The occurrence of levodopa-induced dyskinesias in normal humans is far from a proven fact. Patients with DRD may also develop (mild) dyskinesias, that true. But you don't have DRD (?)

I'm not a neurologist of course, and I can't possibly know if you have PD indeed or not. I'm just saying don't do anything drastic like getting off all your meds just because the NIH doctors think you don't have PD. Get another opinion, from a very experienced MDS, preferably outside a clinical trial.

I hope you will see this message soon.

Let me know what you think!

Hugs
Christie

[soccertese]

i've read that people with essential tremor misdiagnosed with pd given sinemet do not get dyskinesias, same with dopamine responsive dystonia.

[christie75]

Soccertese hi !
What you just wrote is partly correct. Patients with essential tremor do not typically develop dyskinesias. However, patients with DRD may develop mild levodopa-induced dyskinesias , as demonstrated in the following study:


The long-term response to levodopa in dopa-responsive dystonia.

Hwang WJ, Calne DB, Tsui JK, de la Fuente-Fernández R.


Source

Neurodegenerative Disorders Centre, Vancouver Hospital and Health Sciences Centre, British Columbia, Canada.


Abstract


We report the long-term response to levodopa in 20 patients with dopa-responsive dystonia (DRD). We found an inverse correlation between the daily dose of levodopa and duration of treatment (r=-0.59, P<0.01). Mild dyskinesias were present in 20% of our patients. Dyskinetic patients were on a higher dose of levodopa than non-dyskinetics. Dyskinesias responded to a reduction in levodopa, with no deterioration in motor function. We propose that the dopamine turnover might decrease with time, which would lead to a decrease in the requirement for levodopa and the occurrence of dyskinesias late in the course of DRD.

[vlhperry]

I have experienced what you have. After having lived with a diagnosis of Parkinson's Disease, I decided to be evaluated for DBS surgery because I had been put on drug holidays twice one summer. I knew I needed to cut back on medications, and DBS claimed reduction of drugs was a benefit of DBS. Further research also revealed that 50% or more young onset patients had a more positive outcome from DBS surgery. I went to a local University to be evaluated and after undergoing the testing was told I did not have PD, but was rediagnosed with delayed stress disorder. My general Doctor agreed with me, and did not believe the outcome by the movement disorder specialist. The best she could do was to request a second opinion from the Mayo Clinic in Rochester, MN. The Mayo Doctor decided the Movement disorder physician was wrong. He gave me the phone number of Athenia Diagnostics who evaluated Parkin Gene mutations. After the testing came back, it showed 2 mutations of my Parkin gene. The movement would not move off his opinion that I did not have PD.
I found a highly rated National Parkinson's Foundation clinic in my area. the director reevaluated and determined that I did, indeed, have PD. The director did not want me to have the surgery because I was prone to depression which worsens with DBS surgery. I chose to have surgery, having strong Christian values. I had the surgery, and after 8 years have been doing well.

Now, After 8 years one of my batteries are depleted and the fight is on to allow new batteries replaced. The notes of the Movement Disorder is what the Neuro-surgeon has to make his decision and his initial decision was the procedure was unnessary. He is finally convinced and I have an appointment and I have a pre-consult appointment the middle of this month to discuss the replacement of the batteries.

As far as I am concerned, Parkinson's disease is not a disease but a collection of symptoms clustered under one umbrella. As time goes on Diseases that fall under similiar effects are ruled out. They wait until you die and biopsy the brain for the prescence of lewy bodies. If they are there you had Parkinson's disease. However if the lewey bodies do not exist they can't rule out PD because many of those who have Parkin mutations do not have Lewy bodies. Therefore, does Parkinson's disease actually exist?

Vicky Perry

[GerryW]

http://www.thenorthwindonline.com/?p=3869014