[I_Got_it_2]

I remember 5 years ago when I interviewed as a candidate for DBS. The Doc said I was a good candidate and I should consider it, and I was; until he told me how routine this procedure had become.

“Our mortality rate is only 3%,” the surgeon told me.

I thought 3 out of a hundred, 1 in 33 will die. I passed.

PLEASE DO NOT PANIC IF DBS IS IN YOUR FUTURE. THINGS HAVE CHANGED IN THOSE 5 YEARS.

So you now think you have Parkinson’s Disease? Are you sure? I thought I was, when I stopped taking my Sinemet two months ago. Now I am not so sure. Why?

If there are 4 of you reading this post who have a diagnosis of Parkinson’s, really only 3 of you actually have Parkinson’s. That means only 3 have it but what if I am that 1 that doesn’t? No big deal, right? Wrong!

In my case I was with symptoms for over 10 years before being diagnosed with Parkinson’s. At the neuros advice I began Sinemet immediately and stayed with it until just 60 days ago, when I abruptly quit because I was convinced that the very medicine designed to help me was causing me more problems. And sure enough within a few days of stopping the Sinemet, my major problems disappeared.

I just want to say that when you wake up today you may well be in my situation. Assuming I don’t have it 3 others do. What about you?

Jim
P.S. Here are a few clips from the internet:

==============================
If doctors mistake drug-induced Parkinsonism for Parkinson’s disease that means instead of stopping the offending drug, doctors may mistakenly treat drug-induced Parkinsonism with another drug while leaving the patient on the drug that caused the illness, said Sidney Wolfe, M.D., director of Public Citizen’s Health Research Group.
=========================

The misdiagnosis rate can be as high as 30 percent in early Parkinson’s disease, said Dr. Holly Shill, a neurologist and movement disorders specialist at Banner Boswell Medical Center.
=========================

U.S. News
Misdiagnosis remains an important issue. Postmortem examinations demonstrate that approximately 20 percent of patients with a diagnosis of Parkinson's actually have other disorders that mimic it.

[soccertese]

i think the clinicians are saying 30% of early pd cases go undiagnosed as pd and as something else or no disease.
and it's a shame they can't diagnose pd earlier with a DATSCAN.

from the article:
"Movement disorders primarily have been diagnosed through clinical examinations. But a clinical exam can be inconclusive and can result in misdiagnosis, especially during the early stage of the disease, she said. An accurate diagnosis for patients with neurodegenerative movement disorders, such as Parkinson’s disease, can take up to six years.

By the time they are diagnosed with Parkinson’s disease, most people have lost about 70 percent of the function in their dopamine nerve terminals, she said.

Dr. Steve Charney, medical director of medical imaging at Banner Boswell, said he is enthusiastic that this diagnostic tool will help doctors catch Parkinson’s sooner.

“I hope it will allow us to make earlier diagnosis and earlier interventions to slow or stop progression of disease,” he said."
-----------------
http://www.bizjournals.com/phoenix/n....html?page=all

i believe there are other diseases that mimic pd but not that 30% of advanced pd'ers don't have a form of pd. i would think insurance companies would be much more willing to pay for DATSCAN's, etc. if the 30% of pd'ers don't have pd.
i 've read many stories of pd'ers being misdiagnosed for years with something else than pd because their MD didn't think they had pd because they're too young.

[vlhperry]

Do you remember Tenacity Wins? (D. Seltzer) She was misdiagnosed with PD and pushed very hard for DBS. In the process of inserting the DBS they gave her a severe strep infection and discovered she did not need DBS surgery, but had a Malichia Malformation that would have been treatable. The strep infection left her brain damaged.

TenacityWins was a foremost and one of the first advocates for Parkinson's disease. I hope she is OK.

Vicky

[mouka]

Originally Posted by Dianna Wood

Do you remember Tenacity Wins? (D. Seltzer) She was misdiagnosed with PD and pushed very hard for DBS. In the process of inserting the DBS they gave her a severe strep infection and discovered she did not need DBS surgery, but had a Malichia Malformation that would have been treatable. The strep infection left her brain damaged.

TenacityWins was a foremost and one of the first advocates for Parkinson's disease. I hope she is OK.

Vicky

Out of curiosity. Which is better: Now knowing you have PD and wait until obvious debilitating symptoms develop and the start medication, or even surgery, or know early and hope that some medication might work?
I actually would like the opinion of people with PD to answer this simple question.
The reason I am asking this is because a lot of people here seem to prefer not knowing they have PD. At least that's the impression I have.
On a different note, how long does the "honey moon" last once one is put on medication? Is it variable? Can one hope a good 10 years of relief and keep on with daily life?
I am exactly 50 and I am hoping I might be able to work until I am at least 60. My work is mostly intellectual. But it involves writing and explaining complex electronics and computer programming. I was wondering if PD can interfere with my work.

[vlhperry]

Allow life to happen. Live in the moment. Are you able to hold down your job OK now? Be grateful! Don't go looking for problems. If what you are feeling is affecting your ability to enjoy your life, then find a specialist to help you. Tenacity believed the doctors when she was diagnosed with PD. Sometimes people integrate it so deep into who they are they close their mind to other possibilities. All the material at the time of Tenacity's diagnosis pointed to the PET scan and Deep Brain Stimulation as the best approach to treating Young onset Parkinson patients'. The scans and the Stimulation were experimental at the time.

Positive about her diagnosis, she strongly advocated for the most current treatment, in this case DBS. She later found out she never had PD.

Mouka, even today there is no definite test for PD. It can only be clinically diagnosed by a movement disorder specialist. I never suspected I had PD. I thought those around me who expressed concern were trying to run my life. I was happy. I was about to earn my bachelor Degree, newly married, Working two jobs, one full time, the other waitressing and had no desire to cut back. My mother was diagnosed with lung cancer and I went back to my home state to be there for the surgery. Both of my sisters were very concerned with my appearance and insisted I go see a doctor. I promised I would.

When I got back home I felt foolish making a doctor appointment for what I assumed was nothing. The first doctor I saw was an internist. He set up an appointment with a neurologist the next day. I was diagnosed at that visit. I had never even heard about PD.

Everyone here found out differently. Some knew about it and knew the symptoms. Others never gave it a thought. We are not a club or special. We have a common disease we live with. We can't advise you or answer your question , " Now knowing you have PD and wait until obvious debilitating symptoms develop and the start medication, or even surgery, or know early and hope that some medication might work? I actually would like the opinion of people with PD to answer this simple question." Because everyone is so different, everyone may have a different answer. It is best to ask these questions of a doctor you trust to look out for what would most comfortable for you. Your question, as simple as it is, has too many different answers. Just live life day to day, without worrying about the future. Have you ever heard the expression, "God laughs when Man makes plans." Good Luck.

Vicky

PS Have cancelled plans to attend WPC. Too expensive for our blood.

[I_Got_it_2]

Originally Posted by soccertese

i think the clinicians are saying 30% of early pd cases go undiagnosed as pd and as something else or no disease.
and it's a shame they can't diagnose pd earlier with a DATSCAN.

from the article:
"Movement disorders primarily have been diagnosed through clinical examinations. But a clinical exam can be inconclusive and can result in misdiagnosis, especially during the early stage of the disease, she said. An accurate diagnosis for patients with neurodegenerative movement disorders, such as Parkinson’s disease, can take up to six years.

By the time they are diagnosed with Parkinson’s disease, most people have lost about 70 percent of the function in their dopamine nerve terminals, she said.

Dr. Steve Charney, medical director of medical imaging at Banner Boswell, said he is enthusiastic that this diagnostic tool will help doctors catch Parkinson’s sooner.

“I hope it will allow us to make earlier diagnosis and earlier interventions to slow or stop progression of disease,” he said."
-----------------
http://www.bizjournals.com/phoenix/n....html?page=all

i believe there are other diseases that mimic pd but not that 30% of advanced pd'ers don't have a form of pd. i would think insurance companies would be much more willing to pay for DATSCAN's, etc. if the 30% of pd'ers don't have pd.
i 've read many stories of pd'ers being misdiagnosed for years with something else than pd because their MD didn't think they had pd because they're too young.

Soccertease,
Thank you for this perspective and information. I see you as the “Charles Krauthammer” of this site. And I thoroughly respect and agree with his “No holds barred” commentaries.
Turning back to the topic at hand, let’s leave the number of misdiagnosed PKrs be for now. Whether the number is 10% or 30% it is ridiculously high for the treatment to come. Then for the Neurologist to rule out every other disease and take an “it must be Parkinson’s so start taking these meds” approach is insane!
In my case minor, slowly progressing symptoms for a decade including every test possible and no diagnosis. Then comes the diagnosis of PK and Sinemet. Another decade and the Neuro has suggested trying this and that. Then the beginning of meds prescribed to see which one we like better and which most PKrs blindly trust (prescribers are doctors, no?). Then, when symptoms get out of control after years have passed we find ourselves with so many pills chasing so many pills; we need an assistant to keep it all together.
I am convinced that for me, the pills were draining the life out of me. I have no proof from some study, nor am I able to document scientifically what has happened to me. And I know that each of us respond differently to the meds. But I also know that I would have never started the pills I did without this forum wherein was a 1st person account of what it did for her. And now I am traveling down a road I never anticipated, but for which I am very grateful.
To each his/her own. Live outside of your disease, in the fullness of your abilities, never bowing to self pity, in the prosperity only God can give.
And if I have somehow offended you, please accept my sincere apology.

[soccertese]

i can't dispute your personal experience but i can disagree with statistics you post here and try to provide links to information supporting my position.

if one just blindly accepts everything posted here what's the point of having this board?

comparing me to Charles Krauthammer? a right wing commentator? not seeing that as a compliment, i think your're trying to be funny, eh?

just calls em as i see em.

[Tupelo3]

Originally Posted by soccertese

i
comparing me to Charles Krauthammer? a right wing commentator? not seeing that as a compliment, i think your're trying to be funny, eh?

just calls em as i see em.

First Frasier Crane, now Charles Krauthammer. How about Larry David....

[soccertese]

hoping for an extra spot on the new MJF tv show.

maybe his exercise partner, i look pretty good on a spin bike.

[I_Got_it_2]

Originally Posted by soccertese

i can't dispute your personal experience but i can disagree with statistics you post here and try to provide links to information supporting my position.

if one just blindly accepts everything posted here what's the point of having this board?

comparing me to Charles Krauthammer? a right wing commentator? not seeing that as a compliment, i think your're trying to be funny, eh?

just calls em as i see em.

I did mean the rightwing commentater sentence as a compliment. Sorry.

I didn't mean the post to be a statistical/linking post asking for a debate.

I simply wanted to draw attention to the falability of the doctors to something I thought was quite extraordinary.

Jim