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My name is Patti am new member

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Unread 12-09-2012, 04:44 PM   #1
foreverhavehope
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Default My name is Patti am new member

Hello, my name is Patti
I have just joined the site looking to see if others diagnosed with Parkinson's, question whether they have been misdiagnosed.
I am believing this now about my husband, he was dx'd at the age of 60 with Parkinsons and on treatment for 17 years. We have been making changes in his meds slowly doing away with one all together then lowered the Sinamet strength along with slowly cutting back on it, seems it is turning out for the better. I am not use to posting on a forum please excuse any boo boos. Thank you. Patti
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Unread 12-10-2012, 08:59 AM   #2
Jim091866
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Default Hi Patty

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Originally Posted by foreverhavehope View Post
Hello, my name is Patti
I have just joined the site looking to see if others diagnosed with Parkinson's, question whether they have been misdiagnosed.
I am believing this now about my husband, he was dx'd at the age of 60 with Parkinsons and on treatment for 17 years. We have been making changes in his meds slowly doing away with one all together then lowered the Sinamet strength along with slowly cutting back on it, seems it is turning out for the better. I am not use to posting on a forum please excuse any boo boos. Thank you. Patti
Welcome! This may be the club you wish you didn't join. You'll find plenty of people here to help and support you. As far as medications just be careful what you are eliminating and that your husband's doctor knows what is happening. Again, welcome.
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Unread 12-10-2012, 10:13 AM   #3
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Welcome, Patti. If your husband has been receiving PD care from a neurologist for the past 17 yrs, I would say it is highly unlikely that he has been misdiagnosed. The doc(s) knows exactly what to look for as time goes by. Your husband's symptoms may "appear" to improve as he backs off certain meds, but this may simply be a temporary result of "not" taking the meds--if that makes any sense. Most every PD patient will or should take a brief "holiday" from taking sinemet, for example. I have had PD for about 17 yrs; onset of symptoms at age 34. I "feel" better for a few days when I take a 5-7 day break from the sinemet, but it is kind of risky business.
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Unread 12-10-2012, 03:11 PM   #4
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Welcome, Patti. If your husband has been receiving PD care from a neurologist for the past 17 yrs, I would say it is highly unlikely that he has been misdiagnosed. The doc(s) knows exactly what to look for as time goes by. Your husband's symptoms may "appear" to improve as he backs off certain meds, but this may simply be a temporary result of "not" taking the meds--if that makes any sense. Most every PD patient will or should take a brief "holiday" from taking sinemet, for example. I have had PD for about 17 yrs; onset of symptoms at age 34. I "feel" better for a few days when I take a 5-7 day break from the sinemet, but it is kind of risky business.
A member here, Harley, was dx'd with PD at age 27...she is now 54 and has been told she does NOT, repeat, NOT, have PD. She has gone 27 years, half of her entire life, taking PD meds and dealing with the side effects and going to neuros and all the joy that being labeled a PWP brings, to be told now, at age 54, everyone was wrong.

Harley is not alone, you would be surprised at the number of people who are misdx'd with PD. The "estimate" is 30-35%. I think with some of the newer tests that may come out, this will change, but there are a whole lotta folk out there right now living the PD nightmare who may not have to be. You can search this forum for Harley's posts, and this forum and the PD sites for stats on the approximate mis-dx rate. You can understand why it is so high when you realize that the only "definitive" test for PD is the finding of Lewy Bodies in the brain on autopsy. If they find them, you had PD and your dx is post-humously confirmed: if they do not find them, you were mis-dx'd (big consolation after you are gone). Complicating this is the fact that they find Lewy Bodies in the brains of people who never had a single symptom of PD....and that people who manifested PD very strongly have been found to not have Lewy Bodies in their brain at death.

I take all of this to mean that we still have no real idea of what we are dealing with
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Unread 12-10-2012, 04:14 PM   #5
soccertese
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Originally Posted by lurkingforacure View Post
A member here, Harley, was dx'd with PD at age 27...she is now 54 and has been told she does NOT, repeat, NOT, have PD. She has gone 27 years, half of her entire life, taking PD meds and dealing with the side effects and going to neuros and all the joy that being labeled a PWP brings, to be told now, at age 54, everyone was wrong.

Harley is not alone, you would be surprised at the number of people who are misdx'd with PD. The "estimate" is 30-35%. I think with some of the newer tests that may come out, this will change, but there are a whole lotta folk out there right now living the PD nightmare who may not have to be. You can search this forum for Harley's posts, and this forum and the PD sites for stats on the approximate mis-dx rate. You can understand why it is so high when you realize that the only "definitive" test for PD is the finding of Lewy Bodies in the brain on autopsy. If they find them, you had PD and your dx is post-humously confirmed: if they do not find them, you were mis-dx'd (big consolation after you are gone). Complicating this is the fact that they find Lewy Bodies in the brains of people who never had a single symptom of PD....and that people who manifested PD very strongly have been found to not have Lewy Bodies in their brain at death.

I take all of this to mean that we still have no real idea of what we are dealing with
i'd be very surprised if the misdiagnosis rate was that high.
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Unread 12-10-2012, 10:00 PM   #6
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i'd be very surprised if the misdiagnosis rate was that high.
Needs Assessment Statement - National Parkinson Foundation
Sorry, can't copy the full link, but you can Google it via
parkinson *edit*

Quote:
In a
presentation to the Parkinson Action Network in Washington, D.C., Dr. Mark Hurtt, Chief Medical Officer of the Boston Life Sciences, noted that the error rate in diagnosis of Parkinson’s disease among primary care physicians may go as high as 40-50%, and from 30-35% for general neurologists. A 2002 European Journal of Neurology article reported a 20-30% misdiagnosis rate in the early stages of PD, with others reporting even higher rates. Accurate

Last edited by Jo*mar; 12-11-2012 at 02:04 AM. Reason: no linking for new members
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Unread 12-11-2012, 07:53 AM   #7
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Welcome to the forum, Patti. I am one that feels most people are worse off the more meds they are on. The only pharmaceutical I take is armor thyroid (pig source) for low thyroid...I cannot take the synthetic drug synthyroid for that...it makes me tremor more and has other side effects for me. I recommend Dr Laurie Mischleys book Natural Therapies for Parkinsons Disease. She lists things that mimic PD. (along with good foods and supplements for PD). You might find some interesting info there. God Bless!
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Unread 12-11-2012, 08:59 AM   #8
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Originally Posted by LacieCee View Post
Needs Assessment Statement - National Parkinson Foundation
Sorry, can't copy the full link, but you can Google it via
parkinson *edit*
boston life sciences sells/develops pd diagnostic products, i think they might be a little biased.
i guess i should have said i doubt there is 30% or more of long term misdiagnosis of parkinson's.

is that misdiagnosis rate just for incorrectly saying someone has pd or missing the fact they have pd and calling it something else?

sorry, not convinced that there are more than a million people misdiagnosed as pd. but we'll never know until better/cheaper diagnostic tools are developed which is the major point here i think. plus better training of GP's. i showed many pd symptoms which my GP missed, the primary one being lack of right arm swing and we played soccer together!! i also had 2 frozen shoulders prior to my diagnosis. what spurred me on to get a diagnosis was difficulty cleaning my hard contact lenses between my fingers on my right hand, went to see an orthopedic doctor, he referred me to a neurologist.
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Unread 12-12-2012, 03:42 AM   #9
foreverhavehope
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Originally Posted by Aunt Bean View Post
Welcome to the forum, Patti. I am one that feels most people are worse off the more meds they are on. The only pharmaceutical I take is armor thyroid (pig source) for low thyroid...I cannot take the synthetic drug synthyroid for that...it makes me tremor more and has other side effects for me. I recommend Dr Laurie Mischleys book Natural Therapies for Parkinsons Disease. She lists things that mimic PD. (along with good foods and supplements for PD). You might find some interesting info there. God Bless!
I appreciate all replys and Aunt Bean I definately will be getting this book in the morning. The two drugs my husband has been treated with is Sinamet along with MIRAPEX, the neuro's could not get to the bottom of my husbands behavior, they really didn't try only wanted to put him on psychotic drugs which I refused, I slowly started cutting back on the one med which was MIRAPEX , getting him off of it totally, all the hallucinations and violence stopped. Thank God I was able to think for myself, take on the responsibility of doing something. Yes, I really am believing my husband was mis diagnosed and I will go into it further later on. I am thankful we neither one went along with adding all the other meds that Dr.s wanted him to go on, and through those most difficult times they even wanted me to put him in Alzheimer's unit, dx'ing him with that on top of everything else, now they see my husband with the mentality he had prior to being on Mirapex all those years. We will be having our 57 th wedding anniversary, I believe God has many more happy years for us to be together. Anxious to get the book Aunt Bean, thank you for telling me about it.
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Unread 12-28-2012, 06:46 PM   #10
foreverhavehope
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Has anyone's ad their levels checked, Dopamine level? My husbands just came back ver high 2,137 Epinephrine was elevated to 99
the normal range for the lab shows Dopamine normal range 0-40

APPRECIATE OTHERS REPLYING THANK, PATTI
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