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zerohours000

33m. Worried of YOPD

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Hi All

Im a 33 year old male.  I don’t have any tremors per se but have twitching in my left hand.  I also have slowed stomach motility, bad gas, trouble falling asleep, staying asleep and vivid dreams (though no fatigue).  I’m not sure if this is the beginning of Parkinson’s or not, but I’m seeing neurologists soon.  The twitching is about a week old.  I’ve had fasciculations elsewhere but had a “normal” EMG on the 1st of June.  I will also note that I only get tremors if, say, I hold my leg out or incline it at 45 degrees; lean on my elbows.   Or in my shoulders if I’m urinating or hunched over to putt (like in golf).  I’ve also noticed some internal tremoring, like vibrations.  I’ve had dysphasgia but it comes and goes.  I was also wondering if coming off Mirtazipine could cause the twitching at least?  Because I took one after being off it for a day and then it sort of went away for a bit upon taking it.  And lastly, I’ve had violent jerks and twitches right before falling asleep.  Again, not every night. 

UPDATE: Had rheumatologist appointment and they don’t suspect autoimmune; which I kind of already knew.  

Ive been on 300mg Gabapentin /3x daily for a month

30 mg of Celexa for a month 

15 mg of Mirtazipine, titrated down from 45 mg for 3 months.

If you have time, I’ve attached three videos.  Thank you!

https://m.youtube.com/watch?v=OIpik7E87y8

https://m.youtube.com/watch?v=5_kE3YwEtkI

 

Edited by zerohours000

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Zero,

i watched your videos and to be honest, I don’t see anything in them that you should be concerned about. I’m not a doctor, just a guy with Parkinson’s.  I hope that when you see the neurologist you listen to him and accept what he has to say. Some people come on here in hopes that the members of this site will confirm that they have PD. Please do not substitute the advice of unknowns, my self included, for an expert. Good luck with your appointment and let us know how it turns out if you so desire.

Dave

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1 hour ago, DaveN said:

Zero,

i watched your videos and to be honest, I don’t see anything in them that you should be concerned about. I’m not a doctor, just a guy with Parkinson’s.  I hope that when you see the neurologist you listen to him and accept what he has to say. Some people come on here in hopes that the members of this site will confirm that they have PD. Please do not substitute the advice of unknowns, my self included, for an expert. Good luck with your appointment and let us know how it turns out if you so desire.

Dave

Thanks for replying.  And for watching.  I do know something is wrong however.  My PCP’s last notes were he does suspect something rheumatological or neuromuscular.  I’m obviously hoping the former.  I have rheumatology tomorrow.  But either makes sense to me.  My first neuro told me I had Dysautonomia.  Then recanted.  But now I think I should see a movement specialist or at least play wait and see.  The twitching in my fingers is new but I heard non-motor stuff could present first of course, like sleep, stomach, and depression/anxiety.  I was doing better until the twitching started.  I’m not looking into being diagnosed by the members, just looking for info/ a second pair of eyes.  I’ve read all 64 pages of this forum already and it has actually been super informative and I didn’t even know about movement specialists or the advanced in treatment.  Again, thanks for replying and getting back to me.  How are you doing btw?

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I'm with DaveN (and also not a doctor--just a guy with PD).

There's a saying: 'When you hear hoofbeats, think horses. Not zebras.'

PD is pretty rare. YOPD is rarer. YOPD at 33 rarer still.

When you're taking meds that can cause twitching/tremors, and you've recently started or changed doses of one or more of those meds, that's the horse in this analogy. YOPD is the zebra.

Likewise, there's more likely causes for the non-motor symptoms you report than PD. Including the stress of thinking you have something like PD.

For what it's worth (again, I'm not a doctor), 'twitching' and 'vibrations' are not how I would characterize my own tremor, or that of anyone else with PD I've seen.

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42 minutes ago, ShopGuy said:

I'm with DaveN (and also not a doctor--just a guy with PD).

There's a saying: 'When you hear hoofbeats, think horses. Not zebras.'

PD is pretty rare. YOPD is rarer. YOPD at 33 rarer still.

When you're taking meds that can cause twitching/tremors, and you've recently started or changed doses of one or more of those meds, that's the horse in this analogy. YOPD is the zebra.

Likewise, there's more likely causes for the non-motor symptoms you report than PD. Including the stress of thinking you have something like PD.

For what it's worth (again, I'm not a doctor), 'twitching' and 'vibrations' are not how I would characterize my own tremor, or that of anyone else with PD I've seen.

@ShopGuyThanks for replying and watching.  And taking any time whatsoever to indulge me.  I guess I have a question about tremors.  Mine don’t come at rest but rather, for example, if I’m in bed and prop on my elbows.  Then my arms and shoulders begin tremoring violently against the strain.  To give an example, I could do planking (propping one’s self up on their elbows) 4 months ago without tremoring in the slightest.  Same if I bring my legs to my chest, they begin to tremor with my whole body.  I’m not sure if this is nerve damage or what. The sleep has been pretty consistently awful and was actually the first symptom I had.  Followed by the decreased stomach motility (slow digestion). How are you btw?  

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Seriously? This not Parkinson’s. You seem over paranoid. Don’t worry or even suspect you have Parkinson’s until your sense of smell is good. Ie you can smell a banan coffee etc. once you think you have Parkinson’s, your brain will mimic all the Parkinson’s symptoms on web md

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I say no PD. The video doesn't look like a tremor to me. My tremor first looked like my middle finger was vibrating and then increased in amplitude and spread to other fingers within a month or so. 

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1 hour ago, swva said:

I say no PD. The video doesn't look like a tremor to me. My tremor first looked like my middle finger was vibrating and then increased in amplitude and spread to other fingers within a month or so. 

Thanks for replying.  I also don’t mean to diminish anything anyone is going through here.  My first symptoms were not twitching.  They were insomnia (which cost me my 1st job) and the vivid dreams.  I obviously could be wrong and hope so.  My PCP thought either autoimmune or neuromuscular as per his last notes to me.  But I’ve had rheumatology say no way.  I was originally diagnosed with Dysautonomia; POTS; and small fiber neuropathy.  And neurology took that back after a normal tilt table test.  I also have no orthostatic issues (fall in BP).  MRI was clean.  EMG was clean.  Blood work, besides high b12 and low Vit D, was all fine.  But I know something is off.  I was fine March 3rd and March 4th onward I was a mess.  But I thank you for indulging me.  I’ve read all 64 pages of the YOPD forum and you guys have a great community here.  

Zer0

Edited by zerohours000

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2 hours ago, waruna01 said:

Seriously? This not Parkinson’s. You seem over paranoid. Don’t worry or even suspect you have Parkinson’s until your sense of smell is good. Ie you can smell a banan coffee etc. once you think you have Parkinson’s, your brain will mimic all the Parkinson’s symptoms on web md

Hi.  Thanks for replying.  I’ve seen you say that before I think it’s been pointed out that loss of smell, while important in pre-diagnonistics, is not a standard that applies to all with PD, correct?  And would not fit into the cardinal symptoms.  I appreciate the reply and indulging me whatsoever.  If it were just the twitching and shaking I think I would be less worried.  But my symptoms all began with insomnia and vivid dreams.  I hope you’re right though.  I do so hope you’re right!

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51 minutes ago, LAD said:

Live your life. Don’t look for PD. 

 

LAD

Regardless, it’s good advice.  I would love to live my life but the past 5 months has been super difficult and intrusive on it, having lost a job already.  My doctor does suspect something.  But I have neuro appointments coming up.  They’ll probably laugh at me because I’m 33 and “healthy.”  But healthy people imo don’t have unsettling dreams every night, insomnia, shaking hands after basketball, and my favorite: hearing baseball home run calls at night time.  Yes, auditory hallucinations.  It’s been a crazy 150 days!  But I’m prepared for whatever I get.  

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The best advise I would give as an older person is be diligent about your health.  Continue to fight.  If you feel you are not getting answers you need to find a health care person who will listen.  Also make sure you have someone who can go with you.  We often hear only some of what the medical staff is saying.  Write down questions and symptoms.  Good luck!!!

'

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36 minutes ago, scaredsenseless said:

The best advise I would give as an older person is be diligent about your health.  Continue to fight.  If you feel you are not getting answers you need to find a health care person who will listen.  Also make sure you have someone who can go with you.  We often hear only some of what the medical staff is saying.  Write down questions and symptoms.  Good luck!!!

'

Thanks.  I’m starting to have dreams where I either talk or reach out and grab something.  Not good signs...

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Don’t go looking for Parkinson’s. Convince yourself to Wait at least 10 more years before you suspect that you have Parkinson’s. Give your symptoms some time to materialize more. There is absolutely no benefit for an early Parkison diagnosis. So don’t go looking for a diagnosis. I say wait 10 more years before you seek any medical advice. Until then enjoy your life.

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Zero,

My Best advice to you is to give it a rest. It is obvious that you are obsessing over this. I take you at your word that you’ve read every post on this forum. That’s rather extreme if you ask me. You say you hope you don’t want Parkinson’s, yet you are convinced that you have it. PD does not manifest over 5 days or 5 months. It’s a disease that creeps up on you over a long period of time, years. You have way too much time on your hands and your much too young to be fussing over this stuff. i’m sorry that you lost your job. Pick yourself back up and find a new job and I guarantee this will all become an after thought.

Dave

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12 minutes ago, DaveN said:

Zero,

My Best advice to you is to give it a rest. It is obvious that you are obsessing over this. I take you at your word that you’ve read every post on this forum. That’s rather extreme if you ask me. You say you hope you don’t want Parkinson’s, yet you are convinced that you have it. PD does not manifest over 5 days or 5 months. It’s a disease that creeps up on you over a long period of time, years. You have way too much time on your hands and your much too young to be fussing over this stuff. i’m sorry that you lost your job. Pick yourself back up and find a new job and I guarantee this will all become an after thought.

Dave

Thank you, Mr. O****. I received the book you sent as well, which is much appreciated.

I'm thinking something either rheumatologic or neuromuscular. I would like to hear what rheumatology thinks when you meet with them. If they do not provide insights I think we should try to better work up some of the fasciculations you are having with a neuromuscular specialist.”

That’s from my PCP via my patient site.  I get what you’re saying.  But I’m not some rando who hasn’t already been to a slew of doctors.  They agree something is off and either it hasn’t shown its face yet or is strictly speaking idiopathic.  

I’m always going to be diligent about my own health.  If that conflicts with your community here, I apologize.  I’m not here to upset anyone or clog up the message boards.  My job for myself — and only myself — is to respectfully inquire and get information.  I appreciate your input and will continue seek out my answers.

Best,

Zer0

 

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1 hour ago, waruna01 said:

Don’t go looking for Parkinson’s. Convince yourself to Wait at least 10 more years before you suspect that you have Parkinson’s. Give your symptoms some time to materialize more. There is absolutely no benefit for an early Parkison diagnosis. So don’t go looking for a diagnosis. I say wait 10 more years before you seek any medical advice. Until then enjoy your life.

I get what you’re saying.  But this has been intrusive on my life.  Burning pain in my hands and limbs aren’t something I’m going to ignore.  Nor insomnia or vivid dreams I’ve never once had in my entire life. My symptoms could obvious be their own individual things but nothing organic has been unearthed by my doctor team.  I still do my day to day things.  I work at an English Language Learning school.  I play basketball and Mah Jong every day.  Go for walks.  I’m not doing nothing.  But I was fine 5 months ago.  I honestly didn’t have any health issues, was in shape, had two jobs, a social life, my hobbies.  And in literally a few weeks I had a laundry list of symptoms and aggravations.  I’m sure you get people all the time who come on here and are super worried because of some shakes or twitches.  And if I had only those symptoms I wouldn’t be here.  So I appreciate all the feedback and am listening intently.  I want nothing more than this to be somatic or something as simple as a vitamin deficiency.  Time will tell I suppose

Best

Zer0

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What makes you think all this related to Parkinson’s? This is called tunneled vision. You get fixated with Parkinson’s and now everything seems like Parkinson’s. If you think you can have a vitamin deficiency in this country  at age 33, unless you are also malnourished, I don’t know where begin this conversation. You need help with your severe anxiety issues. Seek counseling or something. One way to break the anxiety is to actually believe you have Parkinson’s and move on as normal. You should not worry about things that have no control. You didn’t invite Parkinson’s didn’t you? don’t worry about things you didn’t cause 

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Hey zero,

i hope you don’t have Parkinson’s disease, but you won’t know for certain unless a doctor makes a diagnosis. When is your next appointment and is is with a motion disorder specialist?

The MDS could say it’s too early to say for certain, let’s wait a while, come back and see me in 6 months or a year. What will you do then, will you have six months more of frustration? 

Judging from your videos and the information you’ve posted, it sounds like you should keep an open mind when you see the doctors. There are other medical conditions out there that could have some of the same symptoms that you list, so it’s really too soon to chose PD from a list of chronic illnesses.

The folks on this board want the best for you.  So do your part by getting some answers from a doctor, rather than seeking validation here. I don’t think anyone can offer that to you at this time, until you get some better test results. Then at most, you’ll get suggestions on what steps you might consider.

Please don’t translate what I’ve said into: “We jealously guard membership to this fantastic club. It’s so exclusive that we only accept new members during a secret ritual once a year. Sorry, you missed your window.”  I’m not saying that at all.

Like others, I’m advising you to be patient for a while longer. There’s always time for worrying later.

I know exactly what I’m telling you to do is very difficult, especially when you know something is wrong and your body is not behaving the way it has for years. You want answers now and meds to make it go back to normal. What you actually need is patience and some good medical care.

-S

 

Edited by Superdecooper
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43 minutes ago, Superdecooper said:

Hey zero,

i hope you don’t have Parkinson’s disease, but you won’t know for certain unless a doctor makes a diagnosis. When is your next appointment and is is with a motion disorder specialist?

The MDS could say it’s too early to say for certain, let’s wait a while, come back and see me in 6 months or a year. What will you do then, will you have six months more of frustration? 

Judging from your videos and the information you’ve posted, it sounds like you should keep an open mind when you see the doctors. There are other medical conditions out there that could have some of the same symptoms that you list, so it’s really too soon to chose PD from a list of chronic illnesses.

The folks on this board want the best for you.  So do your part by getting some answers from a doctor, rather than seeking validation here. I don’t think anyone can offer that to you at this time, until you get some better test results. Then at most, you’ll get suggestions on what steps you might consider.

Please don’t translate what I’ve said into: “We jealously guard membership to this fantastic club. It’s so exclusive that we only accept new members during a secret ritual once a year. Sorry, you missed your window.”  I’m not saying that at all.

Like others, I’m advising you to be patient for a while longer. There’s always time for worrying later.

I know exactly what I’m telling you to do is very difficult, especially when you know something is wrong and your body is not behaving the way it has for years. You want answers now and meds to make it go back to normal. What you actually need is patience and some good medical care.

-S

 

Thanks man.  I will.  I have appointments in two weeks.  I’m going to try and avoid this forum until then.  

Zer0

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On 8/2/2018 at 11:52 PM, zerohours000 said:

I’m always going to be diligent about my own health.  If that conflicts with your community here, I apologize.  I’m not here to upset anyone or clog up the message boards.  My job for myself — and only myself — is to respectfully inquire and get information.  I appreciate your input and will continue seek out my answers.

Zero,

I am not in charge of the forum and you are not clogging it up. I am concerned that you have convinced yourself that you have Parkinson’s when your symptoms just don’t line up. From michaeljfox.org:

The cardinal symptoms of Parkinson's disease are resting tremor, slowness of movement (bradykinesia) and rigidity. Many people also experience balance problems (postural instability). These symptoms, which often appear gradually and with increasing severity over time, are usually what first bring patients to a neurologist for help. Typically, symptoms begin on one side of the body and migrate over time to the other side.

There is no objective test (such as a blood test, brain scan or EEG) to make a definitive diagnosis of Parkinson's disease. Instead, a doctor takes a careful medical history and performs a thorough neurological examination, looking in particular for two or more of the cardinal signs to be present.

Please try to keep an open mind and let your doctors do their job. I suspect that if you try to lead a doctor down the path you think is correct, they aren’t as effective at their job as they should be. I really do hope they figure out what is wrong with you. It’s no fun to be concerned over the unknown.

Good Luck.

Dave

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More you keep reading stuff about Parkinson’s in this forum, more you aggravating your Parkinson’s anxiety. Read and do something else to shift your minds attention away from Parkinson’s for a year or so and see if the symptoms remains and if so return back to this forum

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You need to be really busy, intensely busy for couple years to break this anxiety to see if it is truly Parkinson’s or not. Go enroll in school or find demanding job, volunteer, or assignment for the next couple of years 

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On 8/4/2018 at 7:39 AM, Superdecooper said:

Hey zero,

i hope you don’t have Parkinson’s disease, but you won’t know for certain unless a doctor makes a diagnosis. When is your next appointment and is is with a motion disorder specialist?

The MDS could say it’s too early to say for certain, let’s wait a while, come back and see me in 6 months or a year. What will you do then, will you have six months more of frustration? 

Judging from your videos and the information you’ve posted, it sounds like you should keep an open mind when you see the doctors. There are other medical conditions out there that could have some of the same symptoms that you list, so it’s really too soon to chose PD from a list of chronic illnesses.

The folks on this board want the best for you.  So do your part by getting some answers from a doctor, rather than seeking validation here. I don’t think anyone can offer that to you at this time, until you get some better test results. Then at most, you’ll get suggestions on what steps you might consider.

Please don’t translate what I’ve said into: “We jealously guard membership to this fantastic club. It’s so exclusive that we only accept new members during a secret ritual once a year. Sorry, you missed your window.”  I’m not saying that at all.

Like others, I’m advising you to be patient for a while longer. There’s always time for worrying later.

I know exactly what I’m telling you to do is very difficult, especially when you know something is wrong and your body is not behaving the way it has for years. You want answers now and meds to make it go back to normal. What you actually need is patience and some good medical care.

-S

 

Well said!!!

whatever happens ....

Parkinson’s is a word - not a sentence. Your life doesn’t end.... it’s different. 

 

LAD

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