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Kara3

Peeved PreClinical Parkinson's Person

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About 2 years ago I started experiencing signs of Parkinson's....extremely painful leg cramps at night, vivid dreams, small handwriting, internal tremors, eye tremor, nocturnal drooling, dry mouth and occasional tremors in my foot and fingers...to name a few.  After a year of sporadic symptoms I went to see a neurologist who laughed at me and said I didn't have Parkinson's.  I went to another neurologist who also laughed at me and said I didn't have Parkinson's.  I'm not sure how they were so confident since they could not see into my brain, but regardless I'm sure they could have responded in a more compassionate manner.  I guess when you are an arrogant doctor it's better to make the patient feel dumb rather than admit your own ignorance   It is important for me to get an early diagnosis in order to get involved in research.  At least I would feel I was doing something.   There is no research for someone who "thinks" they have Parkinson's.   My mother has Parkinson's along with two of her brothers.  Where is the research on epigenetics, early diagnosis, cure!!!  At this point I feel so hopeless; I'll just  wait for enough brain cells to die, so some brilliant doctor can get out their prescription pad, and write me  a prescription.  I had my first fall last week and messed up my shoulder.  If anyone is aware of research that involves preclinical  PD patients (not sure that's a valid term) I would really appreciate it. 

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I'm sorry that you are going through this, although it is a fairly common story in the PD community. Your best bet is to locate a Movement Disorders Specialist (MDS) and set up an appointment with them. They are a neurologist with additional training in movement disorders such as Parkinson's and MS.

Technically, there is no such thing as a pre-clinical "Parkinson's patient" because in order to confirm that you have PD you have to be diagnosed first. And because Parkinson's is a "rule out" disorder, they have to watch you for about 5 years to see how you progress in order to confirm the diagnosis.

Hope this helps.

Kevin

Edited by RNwithPD

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On 6/28/2018 at 1:23 PM, RNwithPD said:

I'm sorry that you are going through this, although it is a fairly common story in the PD community. Your best bet is to locate a Movement Disorders Specialist (MDS) and set up an appointment with them. They are a neurologist with additional training in movement disorders such as Parkinson's and MS.

Technically, there is no such thing as a pre-clinical "Parkinson's patient" because in order to confirm that you have PD you have to be diagnosed first. And because Parkinson's is a "rule out" disorder, they have to watch you for about 5 years to see how you progress in order to confirm the diagnosis.

Hope this helps.

Kevin

Thank you for your response, Kevin.  The second doctor I saw was a movement disorder specialist at one of the "largest clinical trial programs..." which was why I chose it.  I am not really experiencing any motor issues that would be visible during an exam.  Most of my symptoms are at night except the recent fall.  My only interest at the time was in research; I cannot get involved with research until I have a clinical diagnosis.  Most of their research focused on medications.  I'll take a wild guess they are sponsored by pharmaceutical companies.  I did participate in one study as part of the control group.  They did genetic testing, but since they are not a medical facility will not give me the results.  I don't recall my mother being on medication for that long (5 years) before she got a diagnosis. It is very frustrating to wait as brain cells die away.  I generally have a good attitude for now and try to exercise a lot and enjoy my life while I can.  I worry more about my kids and what their future holds. I hate that I possibly passed this down to them. 

 

On 6/28/2018 at 1:23 PM, RNwithPD said:

I'm sorry that you are going through this, although it is a fairly common story in the PD community. Your best bet is to locate a Movement Disorders Specialist (MDS) and set up an appointment with them. They are a neurologist with additional training in movement disorders such as Parkinson's and MS.

Technically, there is no such thing as a pre-clinical "Parkinson's patient" because in order to confirm that you have PD you have to be diagnosed first. And because Parkinson's is a "rule out" disorder, they have to watch you for about 5 years to see how you progress in order to confirm the diagnosis.

Hope this helps.

Kevin

 

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6 hours ago, fire1fl said:

Your described symptoms seem classic for Parkinson's. You message does not say where you are located but here's a link to the identified places you should get help.

https://www.ninds.nih.gov/Current-Research/Focus-Research/Focus-Parkinsons-Disease/Udall-Centers

 

Thanks so much for the link.  I will check those out. I am pretty much willing and able to travel anywhere for research that focuses on early diagnosis, cures, exercise, or slowing the progression of.  

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Hi Kara,

I'm sorry for your in-betweener status. I know exactly what you're going through. You know something isn't right, you want answers so you can get the right treatment and move on with your life. The doctors seem to be taking so long to diagnose and treat - so that leaves you feeling like - I don't want to be in the position of trying to persuade a medical professional that I have Parkinson's because that makes me look like a hypochondriac; but being told to go home and live my life just ain't right. Who wants a diagnosis of an incurable brain disease that you have to fight everyday...nobody. But you also have family experience with PD and you want to get a head start on treatment to get the best chance for holding things at bay. Also, You haven't said how old you are or whether you look "too young" to have PD. But doctors definitely seem to take that into account.

You're going to have to keep looking for the right doctor. Get a Datscan and try to get a trial of Sinimet. In the meantime, keep exercising. 

Here's what a fellow forum member told me when I was in your shoes..

You are not shopping for a PD diagnosis. You are not shopping for anything. You just need a solid diagnosis, and a solid treatment to match your symptoms. Nothing more nothing less. We can't change what we have, but we can change how we perceive it and, most importantly, how we treat it.  PD is just a disease.  If you end up with a diagnosis of PD remember that , although not the best disease to have, it is certainly far from the worst, and it is highly manageable with drugs almost for decades...

 

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6 hours ago, Superdecooper said:

Hi Kara,

I'm sorry for your in-betweener status. I know exactly what you're going through. You know something isn't right, you want answers so you can get the right treatment and move on with your life. The doctors seem to be taking so long to diagnose and treat - so that leaves you feeling like - I don't want to be in the position of trying to persuade a medical professional that I have Parkinson's because that makes me look like a hypochondriac; but being told to go home and live my life just ain't right. Who wants a diagnosis of an incurable brain disease that you have to fight everyday...nobody. But you also have family experience with PD and you want to get a head start on treatment to get the best chance for holding things at bay. Also, You haven't said how old you are or whether you look "too young" to have PD. But doctors definitely seem to take that into account.

You're going to have to keep looking for the right doctor. Get a Datscan and try to get a trial of Sinimet. In the meantime, keep exercising. 

Here's what a fellow forum member told me when I was in your shoes..

You are not shopping for a PD diagnosis. You are not shopping for anything. You just need a solid diagnosis, and a solid treatment to match your symptoms. Nothing more nothing less. We can't change what we have, but we can change how we perceive it and, most importantly, how we treat it.  PD is just a disease.  If you end up with a diagnosis of PD remember that , although not the best disease to have, it is certainly far from the worst, and it is highly manageable with drugs almost for decades...

 

 

6 hours ago, Superdecooper said:

Hi Kara,

I'm sorry for your in-betweener status. I know exactly what you're going through. You know something isn't right, you want answers so you can get the right treatment and move on with your life. The doctors seem to be taking so long to diagnose and treat - so that leaves you feeling like - I don't want to be in the position of trying to persuade a medical professional that I have Parkinson's because that makes me look like a hypochondriac; but being told to go home and live my life just ain't right. Who wants a diagnosis of an incurable brain disease that you have to fight everyday...nobody. But you also have family experience with PD and you want to get a head start on treatment to get the best chance for holding things at bay. Also, You haven't said how old you are or whether you look "too young" to have PD. But doctors definitely seem to take that into account.

You're going to have to keep looking for the right doctor. Get a Datscan and try to get a trial of Sinimet. In the meantime, keep exercising. 

Here's what a fellow forum member told me when I was in your shoes..

You are not shopping for a PD diagnosis. You are not shopping for anything. You just need a solid diagnosis, and a solid treatment to match your symptoms. Nothing more nothing less. We can't change what we have, but we can change how we perceive it and, most importantly, how we treat it.  PD is just a disease.  If you end up with a diagnosis of PD remember that , although not the best disease to have, it is certainly far from the worst, and it is highly manageable with drugs almost for decades...

 

Exactly.  I told the doctor it's not that I want to have Parkinson's.   I don't want medication either.  I just want to get involved with research and unfortunately without the diagnosis I can't get involved.  It's like the chicken and the egg thing???   Catch 22???   Not sure what it's like other than frustrating.  

I will be 61 in a few days. I first suspected when I was 58, waited a year to see my first neurologist, saw a second movement disorder doc when I was 60,  and I'm guessing won't get a good diagnosis until I'm 65.  My symptoms are very sporadic at this point. 

Good advice.  PD is not the worst thing that could happen. Knowing my PD future gives me opportunities that others may not have had.   Always live your life to the fullest; no one really knows what will happen tomorrow.  I could die in a car accident tomorrow and wasted years worrying about something out of my control, but I still want to be involved and help find a cure.

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