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pabzie

Early onset after major stress

46 posts in this topic

Pabzie,

by how much can you handle anxiety without klonopin?I mean it is a benzo and short acting,so if you are outside doing groceries and it wears off.My MD suggested the anti-depressant lexapro, for long term treatment of anxiety,he said it is more effective.Did your MD ever mention this to you?Do you exercise regularly?Exercise helps me control my anxiety to some extent.I have not decided yet,if I want to try any anti-depressant.I am concerned about too much side effects,expecially,drowsiness.Do you work?

 

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15 hours ago, stump said:

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.

I can't really comment much on the neurotransmitter urine test either because I don't know a lot about it. Though I have read some very good testimonials from people who have used it in combination with the Dr. Hinz protocol to reduce PD symptoms through amino acid therapy, so there is obviously something to it. Years ago I was able to reduce my PD symptoms significantly for many months with amino acids, however the benefits eventually leveled off.

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8 hours ago, Serenity Now said:

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.

I've seen 5 different neurologists, and all 5 of them simply looked at my symptoms and said I have PD. None of them or any other doctor for that matter has ever mentioned a "datscan". I have actually never heard of a datscan until I just joined this forum.

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3 hours ago, otolorin said:

Pabzie,

by how much can you handle anxiety without klonopin?I mean it is a benzo and short acting,so if you are outside doing groceries and it wears off.My MD suggested the anti-depressant lexapro, for long term treatment of anxiety,he said it is more effective.Did your MD ever mention this to you?Do you exercise regularly?Exercise helps me control my anxiety to some extent.I have not decided yet,if I want to try any anti-depressant.I am concerned about too much side effects,expecially,drowsiness.Do you work?

 

Hi again, when I was first diagnosed with PD my anxiety symptoms were at their worst. If the phone rang I would jump and start to tremble. Going to my mailbox made me tremble, fearing what would be in the mail. Just talking to people made me tremble. So what I did was take Klonopin before I had to get groceries or deal with people, otherwise I relied on relaxing supplements because I didn't want to get hooked on the Klonopin.

I was obviously in pretty bad shape because wherever I went people would randomly ask me, "are you okay?". I decided I needed to take an extreme response to all of this and basically stayed away from everyone for a few years. I told my family and friends not to call my phone, and I would spend as much time every day in solitude at the park or the beach. I also napped a lot. Prayer has also been essential as well. Now years later, while I still have the anxiety, it is more under control and I can function a little better, and don't need Klonopin as much. No one ever recommended an antidepressant to me. I try to walk at least 2 miles a day and I believe that has worked wonders. Otherwise I don't feel well from strenuous exercise - my walks are very slow and casual where I just focus on relaxing and looking at nature.

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pabzie,

I am sorry that you had to go through al these problems with social anxiety.I tried to fight my anxiety with exercises and i make sure I socialise as much as possible.Though I take a very small dose,about 0.0025mg of xanax and 25mg metropolol at bed time.If people ask me if I am okay,i tell them,I am okay.Sometimes I do take magnesium too.What you don't want to do is to isolate yourself.I have dealt with fear of the unknown,before being dx with anxiety,then pd.It is unfortunate that medical science has no means of diagnosing PD until the motor symptoms manifest.I bet there are so many pwp out there now with non motor symptoms of PD,visiting the MDs for the treatment of these symptoms,e.g anxiety,without any knowledge that they have PD.I understand you don't get addicted to benzos,if you don't abuse them,as long as you follow the MD's instructions.It is good you mention prayer,a very important aspect of life,whether you have PD or not.In this chellenging times,we all need prayers.No giving up hope.Keep fit.Glory be to God.

 

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On 05/31/2017 at 11:32 PM, 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!

 

 

Yeah.  A highly stressful period in my life made my symptoms worse and pushed me to initially see a Neurologist. 

My PD took a major turn for the worse after battling Sepsis and Diverticulitis.  Its been over a year since the surgery, and I was never able to fully recover.  Its been a downhill slide since.

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On ‎6‎/‎2‎/‎2017 at 6:07 AM, Serenity Now said:

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? It had to get to a debilitating point. Did you have a Datscan? Yes

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. For me, being young and in good health, I was able to hide and try to fight it.  I was looked at funny and literally told "You are too young to have these problems." -  as if I was making this up or something?  or "Good news.  Your brain MRI looks great!" - with a thumbs up as he walks out of the office.  Somehow the good news didn't magically heal me.  Also, "you just need some good exercise" - these were neurologists and orthopedics (because I have back issues too).  However, I never asked about PD because I was unaware.  If I really suspected PD and knowing what I know now,  I would focus on PD centers or specialists who know what to look for.  I finally went to a neurologist who a friend with MS went to and recommended because he dealt with chronic issues.   The doctor knew I had it when he walked in the room and ordered a DatScan for confirmation.

 

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My sudden onset was taken very seriously because my symptoms were so severe, I was in a MRI machine within 24 hours of seeing my first neurologist with brain tumor being primary.  After we ruled out that and ALS and anything easily treatable I was scared because I know Parkinson's was on the top of the list and took a year off neurologists.  It was only when I got bad enough where I thought I may have to stop working (single mom, self employed so not an option) that I went to see a second neurologist and got a dat scan about two weeks later.  He was actually surprised as the sudden onset pointed to a primary dystonia.  There is now some question of that again as I've learned all LRRK2 people have abnormal dat scans even if they do not have PD but all LRRK2 people also have some non motor signs.  So do all LRRK2 have early PD?? We all don't have enough dopamine cells clearly. 

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Murray, 

Thanks for answering my question. Glad you found a neuro who recognized your symptoms right away, as others didn't, and helped you.  

I concur with how people wrote stress exacerbates symptoms.  I just find it interesting how some neuros took a patient so seriously with many sudden symptoms that happened so quickly, like days. Yet other neuros don't recognize symptoms or they dismiss them. I guess it matters which neuro a patient sees.  

 

Lena,

Thanks for your response.  Interesting what you wrote about LRRK2 gene.  

I thought you were the one who suddenly woke up with symptoms you never had.  Your story made me think of the Rapid Onset PD I read about.  

Thanks again to you both. 

 

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On 6/4/2017 at 9:39 PM, afroney said:

Yeah.  A highly stressful period in my life made my symptoms worse and pushed me to initially see a Neurologist. 

My PD took a major turn for the worse after battling Sepsis and Diverticulitis.  Its been over a year since the surgery, and I was never able to fully recover.  Its been a downhill slide since.

Afroney -  I thought you had C-diff like my mom.  Did I mistake you for someone else?

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On 06/10/2017 at 9:15 AM, miracleseeker said:

Afroney -  I thought you had C-diff like my mom.  Did I mistake you for someone else?

Yep.  Had all three.  Still fighting CDiff.  My problem started with Diverticulitis, then Sepsis after my colon ruptured.  Was hospitalized and placed on heavy regiment of antibiotics, until they were able to remove most of my colon.


The surgery and heavy antibiotics use resulted in me contracting CDiff while in the hospital.  Been battling C-Diff for close to a year and a half now. Actually, Im posting from a hospital bed as I type. 

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Sorry to hear this Afroney.   My mom is sort of in remission from the C-Diff (KNOCK ON WOOD)  but she is having problems gaining back the lbs she lost during this time.  My mom weighs less than 100 pounds now so she's skin and bones. She lost about 20 pounds from this horrible disease.   We all take a lot of things for granted or react negatively to certain things.   When I see someone complaining how they need to lose a few pounds  I tell them they should be thankful that they can have the pleasure to eat what they want and have some reserved weight on their bodies for when they get sick they can afford to let it go.  My aunt is very petite and has always been under 100 pounds due to strict dieting.  I told her if she ever gets a disease like C-diff there would be nothing left of her so she better start eating and enjoy it while she can.  No one is going to be on their death bed relieved that they lost those last 5 pounds and had focused their time and energy doing so. 

Edited by miracleseeker
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I am 47 years young and have not been diagnosed with PD as yet because gp thought i had MS, However i do have ongoing hospital appointments and my first visit with Neuro 3 months ago and a long 1 hour long exam i was diagnosed with FND with further scheduled visits arranged with the Neuro due to displaying Parkinson type symptoms not MS as first thought. I,ll update this post with outcome as i,m due second Neuro visit in September.

Neuro has ruled out MS and said not PD but due to displaying Parkinson symptoms and non Parkinson symptoms which he said is very rare he has decided to keep a careful watch over me which has left me with a Limbo diagnosis of what is going on.

During my first Neuro exam I had a Negative hoovers sign and lack of left arm swing, no mask no tremors and had limited movement in left ankle and left arm.

In my case i have left side weakness, left leg limp/drag stiffness in Achilles heal and shin with odd tremor on femur and foot, sometimes take really bad cramp in left foot that pulls my foot like a claw especially after exercise which leaves me with foot pain for a couple days. Always stiff in the morning and during repetitive tasks i will slow down. I get little sleep, no trouble falling off to sleep but waken nearly every morning between 3 and 5am, i suffer night tremors shout and kick in sleep usually 2 or 3 times a month and when stressed the symptoms get much worse. I also suffer from anxiety and depression due to the frustration of sleep and lack of movement. I first noticed symptoms a few years ago when my walking was becoming difficult then stiffness every morning left side slightly dominant but more a whole body stiffness that stays for a few hours, i also have terrible trouble turning over in bed and getting in and out of the car .  I thought i had injured myself in the gym or whilst walking and actually thought the symptoms would go away but they have not. One year ago GP put me on Clonazapam(Klonopin) which Neuro stopped as i felt they did not work, GP then wanted me to try anti depressants which i did try to get some sleep but due to them making me feel dizzy and out of it i stopped them, medication was mitrazapine 15mg. 

I have a permanent Achy left shoulder and sometimes neck with limited movement but i do not have a tremor. 

My symptoms are better some days than others and has me thinking its all in my mind. I constantly exercise every day and cannot run or jog anymore because i usually take instant cramp or pull muscles in my left heal due to the stiffness which is a put off so now stick to walking, I also weight train every other day even though the exercise causes slowing down, what used to take 40 mins in walking same distance is now at 2 hours because i just keep getting slower with left leg dragging and getting achy, i get to the point i have to wait 5 mins before i set off again. Whilst weight training my left arm will give in pretty fast, the reduced movement during exercise contributes to my anxiety and depression however on a good note i feel that for a few hours after exercise i have more energy, no idea why but it feels that way. My body weight is all over the place and i find it very difficult to control now which is very frustrating, i mostly eat healthy foods .

My Limbo diagnosis has me in the frame of mind and attitude of "who cares about yesterday or tomorrow its today and a new day". I am now trying tai chi which i find is very relaxing and long term hopefully help with my sleep issues.  A diagnosis will help me move on but the new way with neuros is diagnose with Fnd until they are sure they have it right. 

 

 

Edited by joeideal
neuro date change

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joeideal,

the symptoms you described looks like PD,but still work with your MD.You can as well ask Dr Okun on this forum"ask the doctor".Take care.

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Hi otolorin

Thank you for replying 

My Neuro and GP have my best interests at heart and i truly trust both which i think is a good start for any person with illness.  My GP has been a real gem who constantly monitors me every 3-4 weeks, takes notes and passes to my Neuro. My GP explained that there are so many ilnesses that can mimic each other especially in early stages that time is what will give a correct full diagnosis with two of the main difficulties being MS and PD which closely relate to each other in early stages. A diagnosis will be done on a process of elimination. My MRI for MS was clear and to date my blood tests have been fine apart from elevated cholesterol which i have medication for.  In fact the FND was diagnosed due to myself having bad shaking episodes, hot flushes, feeling sick and faint when i was in consultation with my Nuero, my wife said that i was very Anxious and thought i was having a panic attack. I actually thought it was because i had a cold comming on and the hospital being hot coupled with poor sleep just elevated it. Now not sure what caused it but i have noticed that i do start shaking when feeling vulnerable or in crowds, something i never suffered or had before. 

Edited by joeideal

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I had a stressful event before the PD. I had cancer and went through chemo and surgery and radiation. I did not expect to survive long after. My surgeon wouldn't even tell me what odds I had. So they were wrong. That was 2003. The PD started in 2006. Got to go we just had a major thunder and I got to unplug. Yikes.

That was a fast moving storm. That first thunder shook the house. It made me think a plane had crashed. Just thunder as it turned out. Lots of rain and a bit of hale in the beginning. Sorry this is off topic.

Edited by MarciaJ
Explaining about storm that was off topic.

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5 hours ago, MarciaJ said:

I had a stressful event before the PD. I had cancer and went through chemo and surgery and radiation. I did not expect to survive long after. My surgeon wouldn't even tell me what odds I had. So they were wrong. That was 2003. The PD started in 2006. Got to go we just had a major thunder and I got to unplug. Yikes.

That was a fast moving storm. That first thunder shook the house. It made me think a plane had crashed. Just thunder as it turned out. Lots of rain and a bit of hale in the beginning. Sorry this is off topic.

Sorry to hear that.  that would certainly weaken your body and bring out anything else going on.  Thunder was going off and on all morning here.

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Wow Marcia, as far as the cancer goes, sounds like you beat it!  Fourteen years cancer free is wonderful!

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On 6/14/2017 at 3:23 PM, miracleseeker said:

Sorry to hear this Afroney.   My mom is sort of in remission from the C-Diff (KNOCK ON WOOD)  but she is having problems gaining back the lbs she lost during this time.  My mom weighs less than 100 pounds now so she's skin and bones. She lost about 20 pounds from this horrible disease.   We all take a lot of things for granted or react negatively to certain things.   When I see someone complaining how they need to lose a few pounds  I tell them they should be thankful that they can have the pleasure to eat what they want and have some reserved weight on their bodies for when they get sick they can afford to let it go.  My aunt is very petite and has always been under 100 pounds due to strict dieting.  I told her if she ever gets a disease like C-diff there would be nothing left of her so she better start eating and enjoy it while she can.  No one is going to be on their death bed relieved that they lost those last 5 pounds and had focused their time and energy doing so. 

Yeah.  Doctors used to give me crap about my weight.   I lost 60 pounds while hospitalized (spent weeks without eating or drinking anything) The only nourishment I got was via IV or the ng tube snaked through my nose to my stomach.  Glad I had a a bunch of fat to burn, though the fast food commercials on TV were driving me insane. 

 

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