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Yesterday, we asked our Facebook and Twitter communities to share their experiences reaching a Parkinson's diagnosis. A common theme to emerge was multiple doctors and several years to a confident diagnosis. Unitl we have a biomarker to diagnose Parkinson's, many more will face this scenario.
Storified by michaeljfox.org · Tue, Dec 18 2012 14:05:17
Yesterday, we asked our Facebook and Twitter communities to share their experiences reaching a Parkinson's diagnosis. A common theme to emerge was multiple doctors and several years to a confident diagnosis of Parkinson's. In the Young-Onset community especially, many expressed difficulty finding a doctors who would consider a Parkinson's diagnosis in someone "so young."
These experiences underscore the need for a reliable test, or biomarker, to diagnose Parkinson's, similar to a white blood cell count for leukemia or a measure of cholesterol for potential heart disease. Unfortunately, there is currently no test that can accurately diagnose or screen for Parkinson's. That's why The Michael J. Fox Foundation is sponsoring the Parkinson’s Progression Marker Initiative (PPMI), a five-year landmark clinical study aiming to identify biomarkers of Parkinson’s disease progression.
The goal of the PPMI study is to identify one or more biomarkers of Parkinson’s disease and is currently recruiting Parkinson's and control volunteers. Learn more about clinical trial participation and sign-up to be notified of trials in your area by creating a profile on Fox Trial Finder today: http://bit.ly/12nbsXx.
It took a year and three Neurologist to convince me that I had PD. It's now been 4 years and at times I still feel as if they are mistaken. My Dad and Uncle have PD also. I am 70 and they are in their 90's.Margie Gonzalez-Chivers@MichaelJFoxOrg My dad it took 4 doctors .SherriFour doctors, two years.Eileen Cassidy Sanborn@MichaelJFoxOrg approximately 3 years, 5 dr's saying conversion disorder and 2 who looked harder. I'm 23, relieved and scared all in one.Jacquie Atkins@MichaelJFoxOrg 7 years, 4 doctors , 1 says i have it, the rest say they havent a clue what i haveMoechapmanRT @MrFlasktastic: @MichaelJFoxOrg Mother had symptoms since 2005, misdiagnosed Tendinitis 3yrs, was using a walker when finally diagnosed #Parkinsons in 2007.Julie Zimdars, CLTCAlmost 2 1/2 years.. probably because I was 32 and they had to rule other more common problems out.Tonya DapsonMy mom was very lucky and blessed with quick diagnosis. It took 2 visits to her family doctor, who sent her to a neurologist, and she was diagnosed and put on meds. 20+ years later, she continues to treat her PD with that same awesome neurologist.Audra Knuth@MichaelJFoxOrg Took 6 years and 4 Neurologists to get a diagnosis, diagnosed in 2001 at age 37.mamagruenewald8 years, 3 neurologists and more other doctors than I can rememberBev Mittan Ribaudo@MichaelJFoxOrg 8 years in and 'could be' is as close as we've got. Similar enough for a boat load of pramipexole every night. Bah.Grove Auto BodyMy husband was SO lucky to have a GP who immediately said she thought it was Parkinson's. All from a pinkie finger that occasionally twitched (just like Michael J. Fox). This was almost 13 years ago and he was 51 years old. He is now 64, doing great, had DBS surgery last year. Many people wouldn't even guess he has it. We have been very blessed with great doctors and a slow progression.Teresa Driscoll@MichaelJFoxOrg Dad diagnosed age 43 in 1974 after 3 years and many misdiagnoses.. Brother diagnosed at age 40 in 1998 in one day.Mary Kay Fitzsimmons3 years. 6 doctors. At the age of 25, they were a bit leary on results.Rebekah WilliamsTwo doctors, eight months.Janet Landrum Trieschmann@mamagruenewald @MichaelJFoxOrg My husband's on that road now. 2nd neuro. One year in. Still no diagnosis. So frustrating and lonely.MelanieWOW! I feel lucky. My GP sent me to a neurologist and she diagnosed me on third visit and put me immediately on meds.Pat Fleener Atchison@MichaelJFoxOrg I had symptoms for several years which were getting worse. I was diagnosed on my first visit by a Parkinson's specialist.Jack Storey@MichaelJFoxOrg I was dx after only about a year because it was right after @realmikefox went public. I said "what about PD".James McCumberHusband - 2 years and 2 doctors. They kept telling him it was stress.Heidi Hess Hurtis@MichaelJFoxOrg I had symptoms for 7 years before I was diagnosed and I lost track of how many doctors I saw...Jessie Lyle3 doctors for me over about a year. One even told me to go home and take some ibuprofen and that it wasn't pd.Garry StanleyIt took five years for my mom. Until someone finally saw the light. Very sad because by then is was very advanced... maybe if diagnosed earlier could have had the medicine to halt it a little longer.Michelle Wåge De FordI lost my sense of smell 7 years before I was diagnosed in 2011. My GP sent me to a specialist for that but the cause was undetermined. After suffering other illnesses my GP sent me to a Neurologist to confirm what he thought and after one visit to a wonderful specialist in Sydney (Aust) I was diagnosed with PD.Janne McMahonI went to 22 different doctors, in 3 1/2 years, before I got in front of a neurologist, who was willing to to consider all possibilities. Most doctos I saw, over the 3 1/2 year period, told me I was too young to be sick and dismissed my symptoms as not being real. The sad part is that when I put all of my symptoms into a search engine online, the only diagnosis that come up is Parkinso's Disease. Since I was 28 when I began having serious symptoms and 32, when I was formally diagnosed, I am still amazed that it took so long. I do feel blessed to know and to have wonderful doctors currently, who provide me with excellenet care.Leo Fontana@MichaelJFoxOrg Going on 3 yrs - 6 drs.Chronic Hell@StreetFoodCarts @MichaelJFoxOrg Thank you both! 2nd diagnosis today with trusted doctor at 4pm. I'll let you know.Chronic HellIt took a year and three Neurologist to convince me that I had PD. It's now been 4 years and at times I still feel as if they are mistaken. My Dad and Uncle have PD also. I am 70 and they are in their 90's.Margie Gonzalez-Chivers8 years, 3 neurologists and more other doctors than I can rememberBev Mittan RibaudoI went to 22 different doctors, in 3 1/2 years, before I got in front of a neurologist, who was willing to to consider all possibilities. Most doctos I saw, over the 3 1/2 year period, told me I was too young to be sick and dismissed my symptoms as not being real. The sad part is that when I put all of my symptoms into a search engine online, the only diagnosis that come up is Parkinso's Disease. Since I was 28 when I began having serious symptoms and 32, when I was formally diagnosed, I am still amazed that it took so long. I do feel blessed to know and to have wonderful doctors currently, who provide me with excellenet care.Leo FontanaI lost my sense of smell 7 years before I was diagnosed in 2011. My GP sent me to a specialist for that but the cause was undetermined. After suffering other illnesses my GP sent me to a Neurologist to confirm what he thought and after one visit to a wonderful specialist in Sydney (Aust) I was diagnosed with PD.Janne McMahonIt took five years for my mom. Until someone finally saw the light. Very sad because by then is was very advanced... maybe if diagnosed earlier could have had the medicine to halt it a little longer.Michelle Wåge De FordFour doctors, two years.Eileen Cassidy SanbornMy mom was very lucky and blessed with quick diagnosis. It took 2 visits to her family doctor, who sent her to a neurologist, and she was diagnosed and put on meds. 20+ years later, she continues to treat her PD with that same awesome neurologist.Audra KnuthMy husband was SO lucky to have a GP who immediately said she thought it was Parkinson's. All from a pinkie finger that occasionally twitched (just like Michael J. Fox). This was almost 13 years ago and he was 51 years old. He is now 64, doing great, had DBS surgery last year. Many people wouldn't even guess he has it. We have been very blessed with great doctors and a slow progression.Teresa DriscollAlmost 2 1/2 years.. probably because I was 32 and they had to rule other more common problems out.Tonya Dapson1 GP AND 1 NEUROLOGIST AND A BRAIN SCAN TO MAKE SURE IT WERE NT MS AND 3 MONTHS BUT I AM IN ENGLAND SO THAT WAS WITH THE NHS SO IS PROBABLY EASIER THAN ON YOUR SIDE OF THE PONDPiers 'Stick' Dale3 doctors for me over about a year. One even told me to go home and take some ibuprofen and that it wasn't pd.Garry Stanley1 year by my regular doctor had no symptoms just felt weird what finally did it was I mentioned to him that at night my voice gets horse and he said that it was possible that I had PD verified next week by my neurologistWilliam SilversteinMy Dad noted to our family GP one day that sometimes he'd go to try to do things like brush his teeth, and he wouldn't be able to do it right away, and that it seemed to be getting worse. The GP, who passed away soon after, just out and told Dad it sounded like Parkinson's, and he sent him to the Ottawa Health Research Institute neurologists to begin seeing Dr. Grimes (sr.). Dad was just about 50 when he was diagnosed, and lived with PD for another 21 years or so before he passed away this February.Jeff Leiper@MichaelJFoxOrg I had symptoms for 7 years before I was diagnosed and I lost track of how many doctors I saw...Jessie LyleJust over 3 years and even then, it was a junior eye Dr who told me he thought my father had Alzeimers. Looked my father's symptoms up online to discover his symptoms were more along the Parkinson's line. Bypassed the GP and went straight to a private neurologist to get the diagnosis...Shaista DarWOW! I feel lucky. My GP sent me to a neurologist and she diagnosed me on third visit and put me immediately on meds.Pat Fleener AtchisonHusband - 2 years and 2 doctors. They kept telling him it was stress.Heidi Hess HurtisMy Dad was diagnosed quickly back in 1986. The pill rolling and his mouth would open when he finished talking, as though he was going to say something else.Jessica Kallai Romeo3 years. 6 doctors. At the age of 25, they were a bit leary on results.Rebekah WilliamsIt took a year and three Neurologist to convince me that I had PD. It's now been 4 years and at times I still feel as if they are mistaken. My Dad and Uncle have PD also. I am 70 and they are in their 90's.Margie Gonzalez-Chivers8 years, 3 neurologists and more other doctors than I can rememberBev Mittan RibaudoI went to 22 different doctors, in 3 1/2 years, before I got in front of a neurologist, who was willing to to consider all possibilities. Most doctos I saw, over the 3 1/2 year period, told me I was too young to be sick and dismissed my symptoms as not being real. The sad part is that when I put all of my symptoms into a search engine online, the only diagnosis that come up is Parkinso's Disease. Since I was 28 when I began having serious symptoms and 32, when I was formally diagnosed, I am still amazed that it took so long. I do feel blessed to know and to have wonderful doctors currently, who provide me with excellenet care.Leo FontanaI lost my sense of smell 7 years before I was diagnosed in 2011. My GP sent me to a specialist for that but the cause was undetermined. After suffering other illnesses my GP sent me to a Neurologist to confirm what he thought and after one visit to a wonderful specialist in Sydney (Aust) I was diagnosed with PD.Janne McMahonIt took five years for my mom. Until someone finally saw the light. Very sad because by then is was very advanced... maybe if diagnosed earlier could have had the medicine to halt it a little longer.Michelle Wåge De FordFour doctors, two years.Eileen Cassidy SanbornMy mom was very lucky and blessed with quick diagnosis. It took 2 visits to her family doctor, who sent her to a neurologist, and she was diagnosed and put on meds. 20+ years later, she continues to treat her PD with that same awesome neurologist.Audra KnuthMy husband was SO lucky to have a GP who immediately said she thought it was Parkinson's. All from a pinkie finger that occasionally twitched (just like Michael J. Fox). This was almost 13 years ago and he was 51 years old. He is now 64, doing great, had DBS surgery last year. Many people wouldn't even guess he has it. We have been very blessed with great doctors and a slow progression.Teresa DriscollAlmost 2 1/2 years.. probably because I was 32 and they had to rule other more common problems out.Tonya Dapson1 GP AND 1 NEUROLOGIST AND A BRAIN SCAN TO MAKE SURE IT WERE NT MS AND 3 MONTHS BUT I AM IN ENGLAND SO THAT WAS WITH THE NHS SO IS PROBABLY EASIER THAN ON YOUR SIDE OF THE PONDPiers 'Stick' Dale3 doctors for me over about a year. One even told me to go home and take some ibuprofen and that it wasn't pd.Garry Stanley1 year by my regular doctor had no symptoms just felt weird what finally did it was I mentioned to him that at night my voice gets horse and he said that it was possible that I had PD verified next week by my neurologistWilliam SilversteinMy Dad noted to our family GP one day that sometimes he'd go to try to do things like brush his teeth, and he wouldn't be able to do it right away, and that it seemed to be getting worse. The GP, who passed away soon after, just out and told Dad it sounded like Parkinson's, and he sent him to the Ottawa Health Research Institute neurologists to begin seeing Dr. Grimes (sr.). Dad was just about 50 when he was diagnosed, and lived with PD for another 21 years or so before he passed away this February.Jeff Leiper@MichaelJFoxOrg I had symptoms for 7 years before I was diagnosed and I lost track of how many doctors I saw...Jessie LyleJust over 3 years and even then, it was a junior eye Dr who told me he thought my father had Alzeimers. Looked my father's symptoms up online to discover his symptoms were more along the Parkinson's line. Bypassed the GP and went straight to a private neurologist to get the diagnosis...Shaista DarWOW! I feel lucky. My GP sent me to a neurologist and she diagnosed me on third visit and put me immediately on meds.Pat Fleener AtchisonHusband - 2 years and 2 doctors. They kept telling him it was stress.Heidi Hess HurtisMy Dad was diagnosed quickly back in 1986. The pill rolling and his mouth would open when he finished talking, as though he was going to say something else.Jessica Kallai Romeo3 years. 6 doctors. At the age of 25, they were a bit leary on results.Rebekah WilliamsJoin the conversation on our Facebook page: How many years or doctors did it take to confirm your Parkinson's diagnosis?Learn more about clinical trial participation and create a profile on Fox Trial Finder today:Parkinson's Disease Clinical Trial Participation | The Michael J. Fox FoundationClinical trials are the final phase in the lengthy drug development process. They are a critical and required step to speed cures. But a ...