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ChrisS

Shot in the dark

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To whomever is out there...

Guess I'll just go for it. So over the past couple of years I've been noticing some changes in my body and wasn't sure what to make of them. I haven't wanted to go to a doctor simply for the fact that I feel like I should be a normal 25 year old male and that maybe the things I've noticed are just all in my head.

 

As I said I'm a 25, almost 26, year old male living in US. I've never had any major health concerns that I'm aware of but like I said I've noticed some things over the past few years that have me a little concerned.

I am a moderate coffee drinker (usually 1-3 cups in the morning/early afternoon) and a moderate smoker (mostly from boredom/when I'm stressed). At first I thought that the shakiness was a caffeine/nicotine thing or perhaps a stress/anxiety thing but now I'm not so sure.

It used to just be resting tremors in the hands, like if I held out an arm my hand would inevitably shake (mostly in the fingers) but lately I've noticed that the tremors seem to be the whole hand and fingers now, and are kinesthetic as well as resting; not ALL the time, but the frequency seems to be increasing and didn't usually happen when my hands were occupied. Now I seem to be fumbling quite a lot (dropping cigarettes, silverware...things that require fine [fluid] motor skills. Even texting or typing now my fingers seem to go off and hit wrong keys, and I don't seem to be able to play the piano as well as I used to (which in truth wasn't all that great but now my playing is just messy). And it seems that when I write a lot ("a lot"=a couple of paragraphs) my hand starts to scrap and my writing becomes smaller and borderline illegible to anyone but me (since I knew what I was writing about).

Ive also noticed "tremors" I guess in other areas, such as my thighs. At first I thought they were just some muscle spasm from something I did (pulling a muscle or from work or what have you). They were or try rhythmic pulses in various areas of the thigh but ive also noticed that the whole leg (either left or right) will jerk suddenly, usually while I'm sitting; almost the kind of myclonic jerk one experiences when falling asleep but I'm definitely awake. And I've noticed that my balance/coordination when I'm walking seems to falter occasionally so I'll stumble to the side or trip over my feet which I don't recall happening when I was "younger". I've been under the impression that I have a moderate lactose intolerance issue which I believe is causing a calcium/bone problem as pretty much every bone/joint in my body cracks frequently so I had assumed the balance coordination thimg might be from that but again, I'm not so sure of anything anymore.I've also noticed some "head bobbing" or unsteadiness but this isn't nearly as common as the rest of the "tremors" I've been experiencing so I wasnt sure but it seemed like in general the tremors are becoming worse and spreading to more areas of my body.

My voice has always been soft/shaky. I rembember in high school doing theater and chorus/musicals that I was constantly being told to project more, but it was always a struggle (and still is) which I attributed to be shy/introverted but ive noticed that sometimes I get stuck on certain sounds/syllables to the point where its almost a stutter which I've never had issues with before. I've also noticed some memory problems lately which is very unsettling for me as I was pretty much a straight A book need in high school. I was always "the smart kid", but now I have trouble recalling things off the top of my head (which I wanted to attribute to me just getting older...though I'm not really that old), but I've noticed that my 50(ish...I forget the exact year she was born) year old mother (who was usually pretty smart/with it) seems to be getting pretty forgetful or confused sometimes which has me worrying not only about her mental faculties but the future of mine as well.

 

These were just some of the things that I've noticed and when "googling" seemed to throw up a red flag. I'm by no means a hypochondriac...why anyone would WANT to be unhealthy is beyond me...but after observing myself for my whole life so far I feel like something isn't quite right anymore and I'm not sure what or why. Like I said I wasnt sure what to expect, if anything, but I figured aside from an actual medical diagnosis, that someone with PD might be able to tell me if I should be worried and look into this further or not. My younger half brother was diagnosed as broad spectrum autistic when he was a little younger which is what got me thinking about this more, as a lot of neurological disorders seem to be tied in genetically. 

Thank you to anyone who may have taken the time to read and/or respond to my query. Its appreciated, even if I get a "nothing to worry about" haha I'd just like a little peace of mind.

 

Best wishes,

ChrisS 

Edited by ChrisS
Forgot piece of info

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Hi, Chris.  I think most of us would agree that your symptoms are classic for Parkinson's.  What we recommend is that you find a  "Movement Disorders Specialist"  who can give you an official diagnosis.  Best to find one connected with a research-university-based medical center through their department of neurology.   It's very important to call soon, as it can take awhile to get in to see an MDS since so many, many people your age and up are having symptoms, and the supply of MDSs at this point is not adequate.  Medical students and practicing neurologists are in training for the specialty, however, as the growing need for them is obvious.  You sound like someone who wants direct answers, so I hope you find our input helpful and not scary.  We are here for you, and you will find the group here extremely compassionate, understanding, and helpful. 

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Linda,

Thank you so much! I really appreciate the advice. I just didn't really put 2 and 2 together until recently and even then I was apprehensive because I hated the idea of wasting a doctors time if my concerns weren't founded on anything concrete. It was actually weird timing because I had been looking into like medical field careers and that's when I started piecing bits together as I was finding like, applicable medical terminology and whatnot. As far as things go, I'm not "scared" per say...I do just want answers and to know that I'm (hopefully) not crazy and all of this isn't just in my head haha I'll definitely look into an MDS as soon as I can...medical stuff is just so expensive nowadays (which is another part of the reason I haven't gone to get this looked at further). But, yeah, thanks again Linda for taking the time to read my post and reach out! 

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ChrisS. The earlier you get diagnosed the less stress you'll have.Make an appoinment asap as per Linda's advice.

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I found a few MDS specialists relatively close to where I live now (as I just moved from NC back home to PA), my only problem is that I'm still on the job hunt so I don't have health insurance at the moment...that'll be my first step I guess; I know some companies don't like to insure people with pre existing conditions so I wasnt sure how much opposition I would face...if only healthcare weren't so gosh darned expensive, but you cant put a price on your life I suppose! I've been afraid to voice my concerns to anyone close to me as I don't want to be told "there's nothing to worry about"/not be taken seriously seriously/etc but I really appreciate the advice and support folks, it really means a lot

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Hi Chris,

just a thought...If you are thinking to buy any kind of Insurances, do it  now prior being diagnosed in your medical recod. I was either  rejected for my Life Insurance or rocket prices.

Take Care,

PD

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Pinkdaisy,

That was definitely one of my fears/concerns about insurance. I was looking into Medicaid a bit but not sure if I'd really qualify and if so, not sure what or how much it'd cover but anything is better than nothing. Thankfully I did find some MDS' up in Erie and down in Pittsburgh so hopefully when I figure out the insurance business one of them will take what I have. Y'all have been so great, I can't say thank you enough! 

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Chris,

Out of curiosity, are your tremors on both your left and right side? 

Dave

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Dave,

I have noticed tremors in both hands but I think my left/non dominant side seems to have them slightly more frequently; though like I said I've also noticed tremors in the both legs pretty equally as well as the torso and head/neck.

When I first started noticing them I thought they were like a nervous tick or like restless leg syndrome or simply just me not having adequate muscle mass to keep myself/ my limbs steady (as I've always been pretty small/slight of build) or something but they've been increasing in frequency and like "magnitude" and have become like "omnipresent" around the body which is what made me look into the neurodegenerative stuff.

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Chris,

Parkinson's normally develops on one side of the body, usually in a hand and slowly will encompass that side over several years.  Eventually, it will progress to the other side.  I was diagnosed with PD 4 years ago with my first symptoms appearing about 6 years ago. To this day, my PD is on my right side only.  Parkinson's develops slowly over an extended period of time. You should make an appointment with an MDS but I would be surprised if you were diagnosed with PD.  My suggestion would be to start an exercise program and secure a job.  This will aid in alleviating some of the stress you may be feeling and who knows it may improve your symptoms.

Dave

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Dave,

Well as I said I've noticed the changes over the past years and they've gradually become more pronounced; it wasnt like acute onset or anything like that. Obviously I don't know for sure what's wrong but PD was the most obvious explanation I could find on my own.

I had a good gym workout regimine for about 2 years or so when I was down in NC (roughly an hour/ hour and a half, 3 to 5 days a week) and, while I have developed better muscle definition, it still persists. I just recently moved back to PA so still working on getting settled/into a routine so haven't been working out as much.

I have been looking for work but there aren't many options in the area where I'm living; thankfully I'm staying with family so there hasn't been much pressure on quickly finding work and frankly I'm much less stressed than I have been the previous years (a little bored, but I don't have bills and things to stress about at the moment). 

As I said I'm just looking for answers/explanations to the things I've been noticing. Thanks for your input/advice Dave!

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Start with a neurologist. For maybe $200 he/she can give you some insight on whether you should be worried or not. 

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In addition to all the good advice you're getting here consider this:

1. When you "drop cigarettes" don't pick them back up. Research nicotine and PD and you'll find there is some active research into whether nicotine has a role in alleviating PD symptoms. If you need to continue to self-medicate, use a less destructive route of administration (gum, lozenge, patch).

2. Caffeine has also been shown in some research to correlate with improved symptoms and/or enhanced  medication effects.

The only non-medical activity that seems to matter is exercise - which you can and should do (Rock Steady boxing, mountain cycling, running, swimming etc.). No matter whether you're diagnosed or not, this will be the start of your future (protection against all manner of illness).

Also you might want to go online to find Federal government PD researchers recruiting volunteers (https://www.ninds.nih.gov/current-research/focus-research/focus-parkinsons-disease )  (likewise the Michael J. Fox Foundation). It is possible to get your diagnosis refined by one of the medical centers conducting research.

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