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pabzie

Early onset after major stress

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Curious if anyone else on this forum had an early onset of PD after a major stress? I am such a case and the doctors have apparently never seen it before. I have some similar symptoms to standard PD, but also some different symptoms not common with PD, so it is very unique.

I just happened to come across an exactly identical case at this link: http://pubmedcentralcanada.ca/pmcc/articles/PMC3742351/

I tried contacting the website where this article is posted to see if they could put me in touch with the woman mentioned in the article (since her case is identical to mine), but they replied and said they couldn't help me. Would be good to find others whose PD started with stress so that we could compare notes and possibly help one another.

Thanks

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A geneticist from the University of Washington came to talk to my PD support group a few years ago. He said genetics loads the gun and the environment pulls the trigger. In my case, I had mild symptoms of PD in my late 20's  After being seriously injured in a motorcycle accident at the age of 45, I developed symptoms more quickly. Still, I knew nothing of PD and was not diagnosed until the age of 57.

This fits for me.

Dianne

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Those study authors would have been in big trouble if they had given you information on the person in the study.  Protecting confidentiality is huge.

 

 That said, it wouldn't surprise me at all that major stressors would bring out symptoms for diseases like PD.  

 

Our brains are amazingly adaptable and can find ways around lots of problems.  But add a major new issue for it to deal with and it might have to abandon that work around.

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I had sudden onset also after major stress and would be happy to talk.  My email is lena.mc@gmail.com

best wishes,

Lena

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I had a dramatic increase in symptoms after stress.  The catch 22 is that I was getting stressed easier too because I fighting PD (and didn't know it).  I couldn't really walk or work.  I went to the hospital for help.  They admitted me and ran every test, except for PD.  I got out, saw another neurologist, and got diagnosed right away.   DatScan confirmed it weeks later and, now that I am treated, I am back to work. 

Edited by MurrayPD2

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I had symptoms now that I'm wiser for a decade but didn't realize and one day I had a death in the family and woke in bad pain in neck and shoulder and leg - that prompted the neurogist and my diagnosis.

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Thanks to those who have replied so far!

In my case, I was otherwise healthy, and after experiencing an emotionally traumatic event, I woke up soon afterward with both hands shaking. The shaking never went away and eventually settled in the right-hand. Then right shoulder became stiff, right leg began to have a full/heavy feeling and 3 years later was diagnosed with PD. Symptoms have continued to progress to tremors in all limbs, and unable to stand up without holding onto something. Found one method that helps somewhat (amantadine).

Interestingly, I've seen 5 neurologists and they are unanimous on the PD diagnosis, but a few MDs do not think it's Parkinson's, with one of them labeling it an anxiety disorder because my anxiety is constantly through the roof for no reason. Regardless, it seems based on feedback and research that getting PD after a stressful event is extremely rare, basically unheard of.

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4 hours ago, stump said:

Those study authors would have been in big trouble if they had given you information on the person in the study.  Protecting confidentiality is huge.

 My thought was that the website or authors could simply contact the person mentioned in the article asking her if she would be interested in speaking with someone who had the same condition as her, and she could decide to contact me from there if she wanted. That way they would not be revealing her personal information and confidentiality would be maintained. But they wouldn't even do that.

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5 hours ago, lenamegan said:

If it's helpful I recently learned most of my symptoms are from a partial functional paralysis from frontal cortex shock and dystonia secondary to my PD.  I highly recommend Dr. Joaquin Farias' book Limitless.

http://www.fariastechnique.com/focal-dystonia-ebooks/

Ironically, there is this movie/tv series called Limitless that I think has a similar analogies to what is like being on/off PD medications. There is a product called NZT that sharpens their focus and intelligence, but the off periods can leave you feeling bad.

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4 hours ago, pabzie said:

Thanks to those who have replied so far!

In my case, I was otherwise healthy, and after experiencing an emotionally traumatic event, I woke up soon afterward with both hands shaking. The shaking never went away and eventually settled in the right-hand. Then right shoulder became stiff, right leg began to have a full/heavy feeling and 3 years later was diagnosed with PD. Symptoms have continued to progress to tremors in all limbs, and unable to stand up without holding onto something. Found one method that helps somewhat (amantadine).

Interestingly, I've seen 5 neurologists and they are unanimous on the PD diagnosis, but a few MDs do not think it's Parkinson's, with one of them labeling it an anxiety disorder because my anxiety is constantly through the roof for no reason. Regardless, it seems based on feedback and research that getting PD after a stressful event is extremely rare, basically unheard of.

Mine was not quite so dramatic (in timeframe).  Although, the last 3 years were faster progressing because I moved states and jobs.  Plus, my wife started to suffer from Hashimoto's Disease amongst other challenges.

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My husband is not young onset, but he was hospitalized for severe Gasteoparesis and he was in so much pain his hands and leg tremors began. The pain was not the cause of the tremors, it was Parkinsonism. Also, he developed dementia symptoms immediately too. Never a symptom beforehand. Interesting.

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Pabzie,

mine started with panic attacks in my teens,then head and neck presssure and occasional dizziness after intense exercise through my lower middle ages.I have all along being treated for anxiety by MDs,until my late forties when I developed left side tinging,numbness and intense anxiety,despite on anti-anxietymedication.This was later followed by balance problems and occasional hand tremor,usually triggered by stress.Stress actually have a major role in triggering parkinson disease.Could you share the other symptoms that are not related to parkinson that you mentioned?Also I would appreciate you stating what meds you take for anxiety and how helpful.I use very low dose xanax at bedtime.

 

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9 hours ago, pabzie said:

 My thought was that the website or authors could simply contact the person mentioned in the article asking her if she would be interested in speaking with someone who had the same condition as her, and she could decide to contact me from there if she wanted. That way they would not be revealing her personal information and confidentiality would be maintained. But they wouldn't even do that.

I would have been surprised if they would have even given your contact info to the study subject.  If I got contact info for some random stranger that read about some study I'd been a part of that wanted to contact me, even for seemingly benign or positive reasons, I'd block all future communication from that researcher and report them to ethical watchdogs.  They maintain confidentiality and anonymity for very good reasons.  The chances of some creep try to proposition them for porn or something (sadly that is a thing, gross as the thought even is), or for an employer (current or potential future employer) to find out and then discriminate against them, or some other adverse event is just too high if they didn't keep such things under very tight wraps.

 

Mind you, I'm not accusing you of doing any of the above.  I believe that you are very well intentioned and would not do any harm.  But the research community can't vet each person that wants such contact opportunities, so they have to draw those very hard and very bright lines.

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9 hours ago, pabzie said:

Interestingly, I've seen 5 neurologists and they are unanimous on the PD diagnosis, but a few MDs do not think it's Parkinson's, with one of them labeling it an anxiety disorder because my anxiety is constantly through the roof for no reason. Regardless, it seems based on feedback and research that getting PD after a stressful event is extremely rare, basically unheard of.

Anxiety is a common problem for PWP.  Before symptoms started I never had the slightest problem with anxiety.  Since then, I've had 3 or 4 full blown anxiety attacks.  The first one especially took me by complete surprise.  

 

Parkinson's doesn't develop suddenly (unless there's some acute brain trauma either from injury or chemical exposure).  It develops slowly over many years if not decades.  The apparent onset of symptoms may seem sudden, even if the disease was actually present for many years prior.  

 

The cause of PD is a breakdown of the dopamine transporter system in the brain.  Dopamine is an important neurotransmitter that is key to the function of the motor control part of the brain.  Hence why PWP get tremors, rigidity, bradykinesia, constipation, stiff/sore muscles, etc.  But dopamine is also an important mood chemical too.  Too little dopamine in the rest of the brain leaves PWP prone to depression and anxiety.

 

So, bottom line is that while an emotionally traumatic event might trigger the apparent onset of your symptoms you most likely have had PD for many years, and likely showed symptoms that just never got tied to PD before now, even if they were mild enough to not warrant seeing a doctor.  Constipation, loss of sense of smell, smaller handwriting, some loss of coordination, softer voice, loss of arm swing, dragging foot, and depression/anxiety are common issues PWP have long before diagnosis that only in retrospect are indicators of PD.

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Good post Stump.   I also believe a major event in life brings it out.  My mom had her appendix removed at the verge of it bursting.  Shortly after that she started to have a shaky pinky finger whenever she was stressed.  I always wondered if the anesthesia used during surgery  was too strong and woke it up.  Who knows!

 

 

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17 minutes ago, miracleseeker said:

Good post Stump.   I also believe a major event in life brings it out.  My mom had her appendix removed at the verge of it bursting.  Shortly after that she started to have a shaky pinky finger whenever she was stressed.  I always wondered if the anesthesia used during surgery  was too strong and woke it up.  Who knows!

Certainly possible.  That said, I'd rather have anesthesia bring on PD a few months or even years earlier than it otherwise would than have ineffective anesthesia during surgery.

 

Though, I do think they tend to overdo the painkillers a bit.  When I was in the recovery room after my hernia surgery I can remember setting off the oximeter alarms 3 times because I forgot to breathe.  I was awake (well, as much you ever are post surgery) and remember getting annoyed at the alarms and wondering why they were going off.  Then either I'd realize I wasn't breathing and would make myself breathe or the nurse would finally come over and abuse me (not in the legal sense) until I started to breathe again.  But I was still in quite a bit of pain, so rather than say "we'd rather you endured a bit of pain than forget to breathe"  or even ask me what I might want they just pushed another dose of fentanyl into my IV.  Then I'd forget to breathe again.  :rolleyes:

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56 minutes ago, stump said:

Anxiety is a common problem for PWP.  Before symptoms started I never had the slightest problem with anxiety.  Since then, I've had 3 or 4 full blown anxiety attacks.  The first one especially took me by complete surprise.  

Parkinson's doesn't develop suddenly (unless there's some acute brain trauma either from injury or chemical exposure).  It develops slowly over many years if not decades.  The apparent onset of symptoms may seem sudden, even if the disease was actually present for many years prior.  

The cause of PD is a breakdown of the dopamine transporter system in the brain.  Dopamine is an important neurotransmitter that is key to the function of the motor control part of the brain.  Hence why PWP get tremors, rigidity, bradykinesia, constipation, stiff/sore muscles, etc.  But dopamine is also an important mood chemical too.  Too little dopamine in the rest of the brain leaves PWP prone to depression and anxiety.

So, bottom line is that while an emotionally traumatic event might trigger the apparent onset of your symptoms you most likely have had PD for many years, and likely showed symptoms that just never got tied to PD before now, even if they were mild enough to not warrant seeing a doctor.  Constipation, loss of sense of smell, smaller handwriting, some loss of coordination, softer voice, loss of arm swing, dragging foot, and depression/anxiety are common issues PWP have long before diagnosis that only in retrospect are indicators of PD.

Thanks for the reply. What you mentioned seems like the textbook response but doesn't match me so much. For example, I do have tremors, stiffness, slowness, loss of right arm swing, smaller handwriting, cramping in the left foot and stooped posture, but I DON'T have many other of the typical symptoms like facial mask, the "cogwheel" effect, constipation, loss of sense of smell, voice issues, dragging feet, or depression. The docs seem puzzled by this when I speak about it.

I also had my neurotransmitters tested and my dopamine was normal even without meds. The only thing abnormal was epinephrine (adrenaline) which was elevated. I also have tremors primarily in motion, but not so much at rest, which one doctor told me is the opposite of most PD patients. I can also stop my tremors by "thinking them away". Is that normal? My foot cramping also appears to be opposite of many people with PD in that it only happens when my left foot touches the ground and is left still.. If I sit in a recliner with my feet elevated, or lie in bed, or walk any distance, I do not get the cramps. This seems the reverse of what I have read about some other people.

Also what's strange about my anxiety is I do not have anxiety attacks. I just feel my body subconsciously tightening up all muscles in all limbs like I'm bracing for impact at all times. Then I tell my body to stop and it stops. I can also see my whole body shake with each heartbeat  fairly often. If something very stressful happens, I tremble terribly for days. Anyway, I seem to be somewhat unique from what I've gathered so far.

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5 hours ago, otolorin said:

Pabzie,

mine started with panic attacks in my teens,then head and neck presssure and occasional dizziness after intense exercise through my lower middle ages.I have all along being treated for anxiety by MDs,until my late forties when I developed left side tinging,numbness and intense anxiety,despite on anti-anxietymedication.This was later followed by balance problems and occasional hand tremor,usually triggered by stress.Stress actually have a major role in triggering parkinson disease.Could you share the other symptoms that are not related to parkinson that you mentioned?Also I would appreciate you stating what meds you take for anxiety and how helpful.I use very low dose xanax at bedtime.

 

Thanks for the message. I never had anxiety before - it started after the emotional trauma and PD symptoms began. I just mentioned some of my other symptoms in another post - primarily anxiety related like my body shaking with each heartbeat. Also if I eat fast food - FORGET about it - -my symptoms go through the roof sometimes for weeks! There is definitely some bad stuff In fast food that affects the nervous system. About six months ago I gave in and had an eclair from a local bakery - I was in bed for a month with terrible symptoms! Eating organic, I feel so much better.

For anxiety I sometimes take Klonopin, but otherwise I rely on several supplements daily to keep my nervous system as calm as possible. I work with a naturopathic doctor every 2 months and we try different supplements. So far I have found glycine, magnesium, California poppy, and trehalose keep my nervous system much more relaxed. If I go too fast in trying supplements I wind up sleeping too much, so we take it very slowly. I've tried stopping the supplements a few times to see what would happen, and I felt much worse, so I know they are helping. At bedtime I often take a product called "Sleep Formula" by Natrogix which has a lot of natural components that help relax the nervous system and help me sleep. Works very well. Still experimenting.

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31 minutes ago, pabzie said:

Thanks for the reply. What you mentioned seems like the textbook response but doesn't match me so much. For example, I do have tremors, stiffness, slowness, loss of right arm swing, smaller handwriting, cramping in the left foot and stooped posture, but I DON'T have many other of the typical symptoms like facial mask, the "cogwheel" effect, constipation, loss of sense of smell, voice issues, dragging feet, or depression. The docs seem puzzled by this when I speak about it.

I also had my neurotransmitters tested and my dopamine was normal even without meds. The only thing abnormal was epinephrine (adrenaline) which was elevated. I also have tremors primarily in motion, but not so much at rest, which one doctor told me is the opposite of most PD patients. I can also stop my tremors by "thinking them away". Is that normal? My foot cramping also appears to be opposite of many people with PD in that it only happens when my left foot touches the ground and is left still.. If I sit in a recliner with my feet elevated, or lie in bed, or walk any distance, I do not get the cramps. This seems the reverse of what I have read about some other people.

Also what's strange about my anxiety is I do not have anxiety attacks. I just feel my body subconsciously tightening up all muscles in all limbs like I'm bracing for impact at all times. Then I tell my body to stop and it stops. I can also see my whole body shake with each heartbeat  fairly often. If something very stressful happens, I tremble terribly for days. Anyway, I seem to be somewhat unique from what I've gathered so far.

I'm a little confused about the bolded part.  What test did they run, and how did they do it?  Was this a blood test?  If so, I'd just point out that peripheral (i.e. blood stream) concentrations of dopamine should have little correlation to the dopamine levels in the brain.  Dopamine itself can't cross the blood-brain barrier, which is why we take Levodopa as that can cross the blood-brain barrier, and it gets metabolized into dopamine once in the brain.

 

The only dopamine test I know of is the DaTscan which uses a radio-tracer attached to a cocaine analogue to measure the amount of neurons that can take up dopamine inside the brain.  But this doesn't give a quantitative measure of dopamine, but an image that has to be interpreted by a human as to whether it indicates a degradation in the dopamine transporter (hence DaT) system.

 

I can't comment on whether or not this site is trustworthy as it popped up from a quick Google search, but what they write in this post at least makes sense to me.  https://bebrainfit.com/neurotransmitter-testing/

 

Anyway, none of us have all of the symptoms.  I don't have rigidity (cogwheel or otherwise), facial masking, stooped posture, small handwriting, or depression.  What I do have is tremor, slowness, cramping in the forearm, hand and foot, constipation, anxiety (though that is periodic rather than chronic) softer voice (minor, only when not on meds), and probably a couple others.

 

Traditionally, to be diagnosed with PD you need to show bradykinesia, plus one or more of unilateral resting tremor (at onset - at later stages this often becomes bilateral and also can become an action tremor), rigidity, and postural instability (uncommon at early stages).  Some docs are now using an updated diagnostic criteria that has a whole bunch of "supporting" criteria and "red flags" as well as some absolute exclusion criteria.  If you have more supporting criteria than red flags, and no more than IIRC 2 or 3 red flags total, and no absolute excluders you can be diagnosed with PD.  I don't have a link handy to the paper that explains that, but you can probably find it easily enough via Google.

 

If I concentrate on my tremors I can sometimes get them to stop.  Usually it require me to take action with that hand.  Though the best action to quell tremors is to take my meds. :)  

 

Anyway, PD is often called a snowflake disease because everyone does have a different experience with it.  However you sound less rare/unique than you think you are.

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pabzie,

does klonopin alone help with your anxiety? or you have to add the supplements you mentioned before you take full control.Thanks for your anticipated response.

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4 hours ago, otolorin said:

pabzie,

does klonopin alone help with your anxiety? or you have to add the supplements you mentioned before you take full control.Thanks for your anticipated response.

Hi again,

Yes, Clonopin alone helps me with anxiety - it just makes me feel mellow and not so trembly and last about six hours. I take it when really anxious or when I expect an upcoming anxious moment.

The supplements are unrelated and are used as a long-term approach. For example, I usually assign a percentage to my overall health at any given time (i.e. my health is around 60% this week). If I continuously take the supplements I may get an additional 10%. Doesn't seem like much but it is HUGE to me. It can mean the difference between having to lie down all day, and being able to go out for a walk and get groceries.

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9 hours ago, stump said:

I'm a little confused about the bolded part.  What test did they run, and how did they do it?  Was this a blood test?  If so, I'd just point out that peripheral (i.e. blood stream) concentrations of dopamine should have little correlation to the dopamine levels in the brain.  Dopamine itself can't cross the blood-brain barrier, which is why we take Levodopa as that can cross the blood-brain barrier, and it gets metabolized into dopamine once in the brain.

 

The only dopamine test I know of is the DaTscan which uses a radio-tracer attached to a cocaine analogue to measure the amount of neurons that can take up dopamine inside the brain.  But this doesn't give a quantitative measure of dopamine, but an image that has to be interpreted by a human as to whether it indicates a degradation in the dopamine transporter (hence DaT) system.

 

I can't comment on whether or not this site is trustworthy as it popped up from a quick Google search, but what they write in this post at least makes sense to me.  https://bebrainfit.com/neurotransmitter-testing/

 

Anyway, none of us have all of the symptoms.  I don't have rigidity (cogwheel or otherwise), facial masking, stooped posture, small handwriting, or depression.  What I do have is tremor, slowness, cramping in the forearm, hand and foot, constipation, anxiety (though that is periodic rather than chronic) softer voice (minor, only when not on meds), and probably a couple others.

 

Traditionally, to be diagnosed with PD you need to show bradykinesia, plus one or more of unilateral resting tremor (at onset - at later stages this often becomes bilateral and also can become an action tremor), rigidity, and postural instability (uncommon at early stages).  Some docs are now using an updated diagnostic criteria that has a whole bunch of "supporting" criteria and "red flags" as well as some absolute exclusion criteria.  If you have more supporting criteria than red flags, and no more than IIRC 2 or 3 red flags total, and no absolute excluders you can be diagnosed with PD.  I don't have a link handy to the paper that explains that, but you can probably find it easily enough via Google.

 

If I concentrate on my tremors I can sometimes get them to stop.  Usually it require me to take action with that hand.  Though the best action to quell tremors is to take my meds. :)  

 

Anyway, PD is often called a snowflake disease because everyone does have a different experience with it.  However you sound less rare/unique than you think you are.

Very helpful, thank you for your reply!

The neurotransmitter test I had was a urine test ordered by my ND. People who balance their neurotransmitters using amino acid therapy rely heavily on these tests and apparently they work very well according to testimonials I've read.

 

 

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12 hours ago, pabzie said:

Very helpful, thank you for your reply!

The neurotransmitter test I had was a urine test ordered by my ND. People who balance their neurotransmitters using amino acid therapy rely heavily on these tests and apparently they work very well according to testimonials I've read.

 

 

From what I have read that test is probably useless for determining the amount of dopamine or other neurotransmitters in your brain.  They will tell you only how much is in your body, exclusive of your brain.  It's obviously your call, but I wouldn't put any stock in those tests with respect to evaluating your PD severity or progression.  I cannot comment on their value for your other purposes.

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For those who had sudden onset after a stressful event...How did you get a doctor to take your situation seriously to get a diagnosis?  Did you have a Datscan?

I don't think my symptoms happened suddenly, although some are more noticeable or didn't happen a year ago.  I also had no stressful event, beside everyday life stressors.  So confused why some doctors are so dismissive to some people.

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