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08-08-2013, 08:04 PM
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Senior Member
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 Hi all,I just returned from my NIH screening and received some stunning news...two doctors told me that I do not have Parkinson's Disease! I am cautiously optimistic pending a DAT scan, but feel rather bewildered at the moment. A big part me wants to write it off as crazy because they examine patients on their meds, but paradoxically this makes their conclusion more accurate, at least in my case. I learned some very interesting things which I will list: People who do not have PD readily respond to PD and contrary to what everyone says a person without PD can grt dyskinesia, so using levodopa as a diagnostic tool is pointless. Levodopa and agonists are highly addictive. The "wearing off" we have and the apparent worsening of our condition in between doses is drug withdrawal, not progression of PD. (Something I have thought for some time now) Therefore using the amount of medication we take as a comparative measue of disease progression is not at all accurate and if anything is psychologically detrimental. My thoughts or observations on doctors after this: Excellent, knowledgeable doctors will welcome your skepticism and encourage you to challenge them. This means they are not arrogant, defensive, or dismissive, but confident, An exceptional doctor will see any hint of PD through the meds. An exceptional doctor will see the larger picture and not simply base their diagnosis on only motor symptoms If your doctor has not corrected your hands or not descriptively explained to you how to move your hands or feet during a motor exam then you likely have not been properly assessed. Neurologists, in my experiences, have rushed through these tests. I can share more or ask if you have any other questions, fire away! Laura Last edited by Conductor71; 08-09-2013 at 02:43 AM. |
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| "Thanks for this!" says: | 12stargate (08-08-2013), anon72219 (08-09-2013), Bob Dawson (08-09-2013), Bogusia (08-09-2013), GerryW (08-09-2013), ginnie (08-10-2013), harley (08-10-2013), johnt (08-08-2013), lab rat (08-09-2013), lindylanka (08-10-2013), moondaughter (08-09-2013), mrsD (08-09-2013), RLSmi (08-09-2013), soccertese (08-08-2013), Tupelo3 (08-08-2013) |
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08-08-2013, 08:20 PM
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Senior Member
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Laura,
Congratulations at your news. What symptom or sign led the doctors to preclude PD? What diagnosis did the doctors give you? John
__________________
Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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| "Thanks for this!" says: | Conductor71 (08-09-2013) |
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08-08-2013, 08:52 PM
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Magnate
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"Levodopa and agonists are highly addictive. The "wearing off" we have and the apparent worsening of our condition in between doses is drug withdrawal, not progression of PD. (Something I have thought for some time now) Therefore using the amount of medication we take as a comparative measue of disease progression is not at all accurate and if anything is psychologically detrimental."
is this your opinion? this is a problem with all drugs affecting brain neurons, they change the brain so your're treating a moving target. but even if our progression might be partly like a drug addiction, what's the alternative? no l-dopa or agonists? DBS? DUPDOPA where we get a constant dose? I'm grateful you bring this up for discussion but it's all we got right now until there is a successful gene therapy, fetal transplant or stem cell treatment. i'm of course anxiously waiting for what your diagnosis is. |
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| "Thanks for this!" says: | Conductor71 (08-09-2013) |
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08-08-2013, 09:05 PM
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Laura, this is amazing. I can't wait to hear more details. I have the same questions as above (I'm sure we all do), particularly with all of the recent discussion hear about misdiagnosis. How many years has this been for you? What symptoms dio you have and what is their alternative dx.
Gary |
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| "Thanks for this!" says: | Conductor71 (08-09-2013) |
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08-08-2013, 11:18 PM
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Member aka Dianna Wood
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Quote:
Over the 25 years of my diagnosis of PD about 1/2 of the movement specialists I have seen are split 50/50 as to my diagnosis. This is a disease that is impossible to pin an absolute diagnosis. A DAT scan can show if your brain is taking up dopamine. Other diseases do not take up dopamine. A diagnosis that is defined by physical symptoms other diseases have in common cannot be a diagnosis. It can't even be called a disease. So how do you define it? Genetics? Exposure to toxins? The brain is an atom that is just beginning to expose its secrets. Scans which can cause cancer by using radio active isotopes can help teach researchers. But at what cost to the recipients of these tests? Genetic testing can find what mutations a patient may have but with the infinite possibities one mutation can cause in a body's chemistry still unknown not to mention any other mutation's affect in conjunction to a parkin gene mutation. Our Country is bankrupt and can no longer offer citizens the basic needs. I will no longer try to solve the world's ills. I hope for your sake, Laura, that you do not have PD, and bless the two specialists for offering you hope. Peace to you, Vicky |
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| "Thanks for this!" says: | Conductor71 (08-09-2013), moondaughter (08-09-2013) |
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08-09-2013, 01:22 AM
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Junior Member
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"Levodopa and agonists are highly addictive. The "wearing off" we have and the apparent worsening of our condition in between doses is drug withdrawal, not progression of PD. (Something I have thought for some time now) Therefore using the amount of medication we take as a comparative measue of disease progression is not at all accurate and if anything is psychologically detrimental."
I can share more or ask if you have any other questions, fire away! Laura[/QUOTE] Hi Laura, This is a good news and hopefully step forward in solving your particular health challenge. I am currently experiencing worsening of my condition, mainly increase stiffness and slowness in my left hand and leg, which I thought was a result of stopping taking Mirapex. I took it only for 8 months, got up to 1.5 mg a day, and titrated off very slowly over the last three months because of the disturbing side effects. I stopped taking it 2 weeks ago and my PD symptoms have worsen in this time. After reading your post I am wondering if this "assumed worsening of PD" are withdrawal symptoms. How can I tell? I am not taking any medication right now but will have to try some very soon just to function at half normal levels (assuming that what I try next will work). Bo |
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| "Thanks for this!" says: | Conductor71 (08-09-2013) |
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08-09-2013, 03:52 AM
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Senior Member
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Quote:
__________________
Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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08-09-2013, 04:35 AM
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Member aka Dianna Wood
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Dear Laura,
From the research studies I have read about your new diagnosis, it sounds like this diagnosis is in addition to your Parkinson diagnosis. The older research many years ago, showed that those with Young Onset type are exquisitely sensitive to synthetic Dopamine. The slightest change in the dose and their body over reacts. I can find no evidence that this new diagnosis will explain why the patient came for a Diagnosis in the first place. Sincerely, Vicky |
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| "Thanks for this!" says: | Conductor71 (08-09-2013), lindylanka (08-10-2013) |
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08-09-2013, 06:13 AM
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Magnate
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i deleted my reply, too confusing.
Last edited by soccertese; 08-09-2013 at 06:45 AM. |
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08-09-2013, 08:30 AM
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Senior Member
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Big Bill says of Conductor71:
Boldly she sailed over the wine-dark sea; Laurels in her hair and dolphins leaping. |
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| "Thanks for this!" says: | Conductor71 (08-09-2013) |
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