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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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I was the first to notice symptoms in my husband's case, he tended to shake a lot when under stress, or hard physical labor, I commented to my son that I wondered if he had PD. So when my husband went to see our Dr. she did a couple tests, mainly the cogwheel test and found he had that and told him he had PD. He also had been losing his balance a lot.

I made an apt. for him with the head or neurology at Brigham and women's in Boston. He confirmed the PD again with just a few in office tests so in his case there was no long time till diagnosis. He was 62 than, he is 68 now. Things have progressed quite a bit but he can still eat by himself, and toilet and shower. His balance is quite bad now but he seldom uses his cane or wheelchair, except when out.

He has swallowing problems as well and a  lot of stiffness, constipation, and urinary incontinence, some memory problems etc.

I know that some people have a great deal of trouble getting a diagnosis, but many others get it first thing.

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Thank you so much for sharing your story, McCall.

Having a family history has made me more aware of subtle symptoms; although, to me they are very obvious.  I would bet many people dismissed years of symptoms before they were diagnosed.  Hindsight is 20/20.  

My mother with PD is 87 and has been in a healthcare facility for 5 years.   I was hoping since her diagnosis doctors had gained more knowledge of early diagnosis and treatments.  She never shared her symptoms with me, so it was only what I observed as the disease progressed....frequent falls, hallucinations, tremors....

  I have already learned so much from reading this forum!

Thank you again for sharing your experience.  It sounds like you found some good doctors.  I will keep you both in my thoughts and prayers! 

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Hi Kara,

It's clear that your distress is real, and it's obviously frustrating not having clear answers. And there's no excuse for medical professionals not taking a patient's concerns seriously, even if they think those concerns are unfounded.

Having said that, it seems reasonable to consider that you in fact don't have PD. Look at it this way: PD is actually pretty rare, even for folks in their 60s, with non-tremor dominant PD less common than tremor-dominant forms. PD accompanied by known genetic markers (LRRK2, SNCA, etc) is even rarer.

From my own experience, as well as that of friends and family w/ PD, diagnosis by primary doctor or general neurologist is uncertain, but diagnosis by experienced MDS is about 95% accurate, at least with sufficiently advanced symptoms. I had *extremely* mild symptoms when dx'd--yet my MDS picked it up with less than 15 min. exam. DatScan is about the same accuracy, but there's still a subjective element in interpreting scan results, and diagnosis might not be clear early on.

Quote

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.

The sounds like little-to-no progression in three years. Very unusual if it's PD (and I say that as someone who 4 years in still has very mild symptoms, even unmedicated, and what I'm told is very slow progression).

I can sympathize with wanting to more active in research--I have been, and it's rewarding. But being in clinical trials will likely have little if any personal benefit (most trial drugs don't work, and even if they do, there's generally a 50-50 chance you'll be in the placebo arm). The desire to help others by participating in trials is admirable, but without strict controls on who participates, the results are meaningless and help no one.

I get the desire for certainty, but my experience with PD has been that there's still plenty of uncertainty, post diagnosis. I know at some point I'll be unable to do what I do now, but I have no real idea *when*. PD comes with something like 40% risk of eventual dementia; YOPD (which includes me) comes with a high risk for depression and anxiety. These concern me more than physical disability, but I have no way of knowing if or when I will be affected. Existing PD drugs do a notoriously poor job of treating non-motor symptoms.

As others have mentioned, if you believe you have symptoms that put your health at risk (injury caused by falls, for example) you should be able to find a doctor who will agree to a trial of sinemet--I believe it's generally considered safe for someone to take for a short time, even if they don't have PD. DatScan is very expensive if not covered by insurance, and as I mentioned above, prob. no better than exam by a skilled clinician. I hope the neurologists you've seen have already ruled out other, potentially more serious conditions.

Short of that, the best advice is prob. to keep exercising, eat a balanced, healthy diet, put money away for retirement if you're still working, and maybe purchase long-term disability insurance (something you won't be able to do if and when you have an official dx).

All good things to do, even if you're never dx'd with PD.  

 

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Thanks ShopGuy for your kind response.  Some of my symptoms are fairly recent (within the past few months), so the doctor MDS did not hear about them.   My fall, nocturnal drooling, dry mouth and eye tremor started after my last doctor's appointment; although, I did send him an email about the eye tremor, and he wanted me to come  back in.  My motor skills for the most part had not changed enough to be evident in an exam (I practice them everyday);  he's not a doctor I would ever see again.   Also a fairly new symptom is losing my balance ex.  when I turn left I sometimes keep leaning left and start to fall; although, I generally stop myself.  I do a lot of hiking up and down rocky terrain and believe that helps.

I also worry more about depression, anxiety and apathy than I do physical disabilities.  I have always been a very positive person and could snap myself out of self-pity, sadness or depression.   I can't really think of a time in my life when I have been depressed.

I can feel the tremors inside my body.  I am quite confident that I do have PD, but I hope you are right.  The advice you just gave me should have come from the doctor.....eat healthy, exercise, plan your finances..... Thank you!

 

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Kara,

Please don’t take what I say the wrong way. Parkinson’s is difficult to diagnose when symptoms are sporadic. Symptoms can also be magnified when you focus on obtaining a diagnosis. When I was first diagnosed, my symptoms were much more prevelant in the beginning because I was worried about having Parkinson’s. Now that several years have passed I have found that everything has settled down. ShopGuy has some great advice that should be headed.

Dave

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