Jump to content
helplinedonate
z3rky

Signs on early onset Parkinsons?

Recommended Posts

Hello All,

I'm 31 year old male. Starting 10/01/2014 I noticed that my right index finger (dominant arm) was twitching, I could see the muscle on the inside of my finger firing, having a spasm which was forcing my index finger to move away from my other fingers, it didn't hurt but I could feel it, it happened once in the morning, fired for about 4-6 times at a fast pace for about 2 seconds, and then happened again once in the afternoon, and again in the evening. When it happened in the evening I made the huge mistake of searching the internet for my symptoms the first things to come up were Parkinson's, MS, and ALS.

For the first couple days my thumb and index finger on my right hand was twitching as well as my pinky on the left hand, all similar type of twitching, I could see and feel the muscle firing, there was no pain and it happened sporadically during the day, it wasn't constant. Then the twitching in my hands just seemed to stopped one day but it seemed to be replaced with pain. The areas around my knuckles were sore, especially on my right hand and my wrist began to hurt.

I went to my family doctor who did some basic in room movement test, blood work, and referred me to a neurologist. The blood work came back fine but she said my Creatine kinase (CK) levels were high at 400 and to get more blood work in a week. A couple days later both of my legs started having hot flashes which put me in a panic so I made a trip to the ER. They did a CT scan of my head which was normal and they took more blood, it was normal and my CK count was down to 170 which was good.

By this point my symptoms had changed yet again, my twitches were back (still not in the hands though) but all over my body, legs, calfs, butt, arm, back, sometimes even my face, mainly on the right side but also sometimes on the left, some were singular twitches only occurring once during the day, others more constant and lasting longer. I also was getting pain in my right bicep as well as the area near my armpit close to my chest, and in my lower bicep muscle near my elbow crease.

During the neurologist visit I passed all of the in office tests which tested my balance, gait, strength, and coordination but due to my symptoms he suggested I come back for an EMG and brain MRI. MRI was normal as well as the EMG. While in the office my left shoulder was twitching and he told me he thought I was experiencing benign fasciculations. 

My arm pain has not gone away and I don't think it's gotten worse but it's very concerning and now I have started having tingling, numbing, and soda water/ants crawling under skin sensations in my right leg. Most of this SEEMS to be sensational, for example, my right arm feels tight (especially around my bicep area) but I can still move it like normal, but the sensation alone is bothersome. This is even more concerning as everything is happening on my right side and it involves pain which I can not avoid. I'm so hyper aware of my body right now which I know doesn't help.

I'll continue my doctor visits until this thing is figured out or it gets better and will update this post.

I just want to figure this out at this point, good, bad, indifferent, any insight may be helpful, thank you for your time and response.

Share this post


Link to post
Share on other sites

"When it happened in the evening I made the huge mistake of searching the internet"  Lol....yep, don't DO that! You'll freak yourself out. Odds are that it's NOT something serious like PD or MS. Your doctors and specialists will figure it out. Until then, I would just relax. Good luck, tho.

  • Like 1

Share this post


Link to post
Share on other sites

My arm pain has not gone away and I don't think it's gotten worse but it's very concerning and now I have started having tingling, numbing, and soda water/ants crawling under skin sensations in my right leg. Most of this SEEMS to be sensational, for example, my right arm feels tight (especially around my bicep area) but I can still move it like normal, but the sensation alone is bothersome. This is even more concerning as everything is happening on my right side and it involves pain which I can not avoid. I'm so hyper aware of my body right now which I know doesn't help.

 

 

PD is generally diagnosed with an L-dopa challenge and you should ask your doctor to administer one at an appropriate time.  Meanwhile, welcome!  BTW I think you're confusing the word concerning with disconcerting and sensational with sensory in your post replicated above.   You're not alone in mixing up these words on these pages....I see it all the time and frequently get spellings wrong myself.

 

ps.  Your description does not sound like Parkinsons Disease to me, And I've been a PWP and student of the illness for 20 years or so.  

Edited by Rogerstar1

Share this post


Link to post
Share on other sites

We are not doctors but usually PD starts on one side of the body and then takes time to progress.  You describe having thumb twitching on one side and then pinky on the other along with an extremely fast progression.  I would stay off the internet and let the doctors figure it out.  Best of luck and keep us posted!

Share this post


Link to post
Share on other sites

PD is generally diagnosed with an L-dopa challenge and you should ask your doctor to administer one at an appropriate time.  Meanwhile, welcome!  BTW I think you're confusing the word concerning with disconcerting and sensational with sensory in your post replicated above.   You're not alone in mixing up these words on these pages....I see it all the time and frequently get spellings wrong myself.

 

ps.  Your description does not sound like Parkinsons Disease to me, And I've been a PWP and student of the illness for 20 years or so.  

 

I'm one of them!  :-)  I'll remember to use disconcerting now instead of concerning.  Thanks.

Share this post


Link to post
Share on other sites

Wow, thank you all so much for the feedback, you guys are quick!

 

I'll have to watch out on my use of concerning and sensational and use disconcerting and sensory when appropriate, I've probably been guilty of that for a long time.

 

Update *** As the neurologist has told me to wait 6 weeks and only contact him if my symptoms get significantly worse I made an appointment with a muscle/skeletal doctor hoping he may be able to help figure out my arm pain issues and now leg numbness/tingling sensations, which continues to happen only on my right side, all though my twitches are more widespread.

 

He noticed a couple of odd things, the most important one being that my right bicep (dominant arm) was flatter than normal when relaxed especially in comparison to my left, yet when flexed (during his strength test) it appeared normal. He stated that all they can do is rule things out which I understand, so he prescribe me some steroids to take to rule out inflammation caused by neck strain which can apparently cause all kinds of weirdness throughout the rest of the body, if the steroids don't help with in 10-14 days he'll schedule a neck and arm MRI to start ruling out other issues, the waiting game continues.. ***

 

Thanks again for everyone's input, I'll update in two - three weeks.

Share this post


Link to post
Share on other sites

Z3rky,

 

I was wondering, do you take statins for high cholesterol?  I used to be on lipitor for a long time till I started having a negative reaction to it.  My CK Levels were so elevated that I was experiencing severe muscle cramps every single day.  Once I stopped taking the drug, everything returned to its normal state.  Sometimes a prescription can turn on you and leave you with all sorts of strange symptoms.  For what its worth, your symptoms don't sound like PD.  Good luck in getting this figured out.

 

Dave

Share this post


Link to post
Share on other sites

Thank you for the feedback Dave, that's interesting about the statins connection with high CK levels.

 

I am not currently taking any meds (nor have I in the past) other than the steroids my doctor suggested recently. I have to give it one more week and if nothing improves (which is hasn't yet) then I'll hopefully be getting a neck and arm MRI.

 

Also, I just found out that my vitamin D levels were at 28 ng/ml which, apparently, is low and they want it to be > 40 ng/ml. I need to take 50,000 units of vitamin D weekly for 2 months as well as 2000 units daily, and they'll recheck my blood in 6 weeks. I'd be shocked if this was the culprit of all my symptoms though, the issues I"m having just seem to be getting weirder.

Edited by z3rky

Share this post


Link to post
Share on other sites

I finally saw an MDS.

 

After the usual routine exam, he looked over my brain and neck MRI, and all the blood I've given.

 

He indulged me while I read off my list of symptoms which are mainly the same as when I first posted - except now I'm noticing more exercise intolerance (my muscles get very stiff after exercise, mainly my right side, like I've been lifting 25lb weights instead of 10lb weights, or running instead of walking), stars/floaters in my left eye (sometimes both) upon standing (not all the time), random facial numbness which comes and goes, and sometimes my right hand will be freezing cold compared to my left, also, sometimes my muscles twitch after being touched, shortly after scratching my thigh I"ll notice it start to twitch, or if I scratch my forehead for example, no place seems safe. My biggest culprit still being pain, that's what continues to bring me to the doctor, my right arm is fairly constant and doesn't let up.

 

He told me that my neck MRI showed that my neck muscles were very tight and I had a little arthritis but that was it. He took my blood pressure while sitting then had me stand for 2 minutes and took it again, it was still low which isn't normal, he suggested I might be dehydrated (I drank plenty of water that day but what do I know). Again the CK fluctuation in my blood work came up which he thought was odd and said I should get that rechecked. He also noticed that something in my blood pointed to me having a virus at some point, I should have asked him what that meant, like does that mean 5 years ago or sometime recently?

 

Once we were all done he looked at me and told me I did NOT have Parkinson's and that whatever I was experiencing he did not think it was neurological in nature but b/c of some of the blood findings I should see the Rheumatologist again.

 

He then continued to tell me that this did NOT mean I could never develop Parkinson's and that I may develop it in the future and he threw down some statistics, he reminded me of this about 3 times during the visit and to really send the point home (pun intended) he put it in his summary note to me - (https://www.dropbox.com/s/ii0lsab7a79k7zn/2014-12-10%2007.23.16_edit.jpg?dl=0), I think he didn't want to overwhelm me so he left out that I may get cancer at some point or die of a heart attack or that I might be hit by a bus tomorrow.

 

All said, I'm glad to hear it and am looking forward to moving past this but until my symptoms stop my doctor visits will continue, I'll just be searching down a different path other than neurology. I do have this fear that no one will know what's wrong with me until it's PAINFULLY obvious, hopefully that WON'T happen and a doctor along the way will help me figure this out and get me some help.

 

Thank you all for your comments and feedback, I really appreciated it!

Share this post


Link to post
Share on other sites

I am not a medical professional.

BUT

Given your CK levels, blood pressure, muscle weakness, "dehydration" without being dehydrated, musculoskelatal symptoms, and even your vitamin D deficiency, ...

have you considered seeing a nephrologist? The CK levels and blood pressure alone are red-flags for me for kidney disorders.

 

A family member has a rare kidney disorder. If he is due for meds (usually right before his morning dose) he will get tremors. Prior to diagnosis, he would feel so weak that his knees would buckle when walking.

 

I know how frustrating looking for answers can be, so I hope this helps.

Edited by impossible

Share this post


Link to post
Share on other sites

Thank you for the info, I will definitely bring this up with my doctor, I have told my doc's that I"m down to try any test at this point, I just want to figure out what's going on. I have another appointment coming up, I'll see what they think. I will definitely update this post if/when the doctors figure it out.

Share this post


Link to post
Share on other sites

Well, I'm back and I don't know what's going on anymore, I'm so lost.

 

Since all my symptoms started in Oct my biggest fear was Parkinson's, mainly b/c I went from NEVER thinking about PD to thinking I had it. It hit me like a freight train, I was trying to brush my symptoms off in the beginning but more and more things just kept happening on one side of my body (my dominant right side) which kept bringing me back to PD and seeing more and more doctors.

 

I started out with twitches (not tremors), then pain/burning sensations, then tightness. It started with my right index finger -> hand -> forearm ->bicep -> armpit/upper chest -> shoulder. Then I started to get weird sensations in my right leg and my knee would pop while walking, then my hip starting hurting. I've seen countless doctors by this point, one neurologist twice, an MDS, and two different Rheumatologist's. Mid way through all this I started suspecting PD (mainly b/c everything was one sided (or at least 90%)) and voiced my opinion during my doc visit's, especially to my MDS, none of them thought it was that. By my last appointment, I was exhausted by all of this and just wanted it to stop, I told myself what ever the MDS said, I would just go with it, he flat out told me it was not PD and he wasn't even sure if it was neurological in nature.

 

I drank the kool-aid and left, it did make me feel better, after that I just took it easy and kept repeating what he said to myself, in my free time I did walks instead of runs and didn't do anything strenuous, I seemed to be improving, it was NOT a complete reversal but my pain was more in the background instead of the foreground, my wife even made a comment that I seemed more active and upbeat, but then something happen..my shoulder pain started to slowly get worse and worse, to the point it was hard for me to sleep, then my hip pain took it into high gear for no apparent reason..I"M ONLY 31! what is happening???

 

Odd thing is, the tightness in my right hand and most of the arm pain is gone, but it's more than made up for with my shoulder and hip pain which is always there but seems to range in severity by the hour, sometimes it breaks my concentration b/c it hurts so much, other times it's as if it's not there, and I occasionally have random numb patches on my face, they've been very brief so far. I still get twitches, but they're more wide spread around my body on both sides and don't happen often.

 

I keep going back to PD, I don't really know why, maybe it's b/c when ever I look online the only things that makes since is PD because PD doesn't make any sense, it seems to be so different for everyone.

 

I really don't know what to do at this point, I'm feeling so lost and unsure. Sometimes I feel certain it's probably PD, other times I think I'm crazy for thinking that. I'm trying to reach a point we're I'll just stop thinking about it and let time do all the work, I'll either get better or worse, it's getting in that mind set that's tough.

Share this post


Link to post
Share on other sites

Zerky -- how is life in general?  Stess?  Work? 

 

Have you tried massage, yogi, breathing exercises?

 

I tend to spend way too much time at a desk, leaning over a keyboard.   Neck, shoulder, back issues.   Twisting the wrong way, and ouch.  There are bunch of non-PD issues but just working on posture, breathing, and stretching every 5 to 10 minutes per hour does wonders.  A lot of time is spent on conference calls.  I'm lucky in having an office, so I can be on a call, yet I'm doing yoga poses!

For me the biggest relief was my cycling.  I just loved to get out in the fresh air, and do long rides.  Getting the blood pumping, heart racing, and long weekend rides helped me sleep better and kill of stress.

 

I had been working 80 hour a week, killing myself with stress and deadlines, when I had first gotten out of school.  Irony was I never felt in control of getting things done. I had quit that job, pretty pissed at the corporate world, and moved to Germany.   35 hour work week, but it was like I was so fresh I actually got more done.  In the office at 7:00am.   30 minute lunch.  Leave the office at 3:00pm.   Afternoons were hiking, swimming, cross country sking, or bicycling.  I had never felt better in my life!  Highly productive at work, as I was would be thinking of problems/solutions/issues during that free afternoon.  Next morning it was good.   A lot of my health issues cleared up!

 

In Hindsight, my PD had been there for years.  Exercise, Diet, and Sleep all played a huge role.  Stress plays a huge role in symptoms.

 

I've mentioned it before, but if you are not peeing clear or light yellow, you are not getting enough water.  By the time most people think they are dehydrated, they really should be in a ER getting fluids! 

 

Meanwhile, stay off the internet.   Find ways to reduce stress (neck muscles being super tight says you have lots of stress).   One thing I've told my kids is to find a job you are happy with.  If you find something personally satisfying, rather than just for money, it makes like so much easier.  I wouldn't change a thing in my life, but as I get older I realize the fewer material things I have the better.  

  • Like 2

Share this post


Link to post
Share on other sites

Thanks TexasTom for the kind words, I hate being this way, I really do, it's hard to imagine that just in Aug I was running 3 miles every other day and doing pull ups with no problems, last thing on my mind was pain or a disease, especially something like Parkinson's. I just can't understand the transformation I've gone through since Oct, it's been a rollercoaster ride from HELL that I want to get off of. I'm just starting my career and my family is expanding, now the thought of possibly my life changing in such a dramatic way and having the lives of my wife and children change with it is brutal to me, especially at this stage of my life, and then I think that I'm just really OVER REACTING and feel foolish for even thinking PD, it flip flops like this constantly for me and it's getting to the point that anti-anxiety meds are looking more and more like a good option. I try to encourage myself with the fact that I was feeling better, not a day, not a week, but for at least two and half weeks it felt like I was actually getting better, my symptoms were lessening, I was getting better sleep and just more of my old self, then it just went down hill again and now I find myself trying to get back to that point.

 

It's so hard when you know something is wrong with you but all the doctors keeping saying they cant find anything, I've looked into BFS, CFS, and even gluten intolerance (suggested by my last doc appt) as possible causes, but I keep finding myself back at PD.

 

It's the pain, it's hard to get away from it, and it's so random, throughout the day my hip will go from hurting on the side, to being more like a pressure sensation, to moving to my groin area, and then back to my hip, there seems to be no rhyme or reason to it other than the general area, same with my shoulder, as I'm writing this it doesn't hurt, but I know later I'll be in the exact same position and it will just become really painful, it fluctuates so much through out the day.

 

I am definitely stressed and anxious, no doubt about it, but I really feel it's stemming from my physical symptoms, if my right hip hurt and my left shoulder was sore I probably wouldn't be on this forum, it's the fact that most of this is happening on one side of my body that keeps bringing me back here (even my neck hurts on the right side only). I've had the MRI's, I have the blood work, I've had the in room clinical observations, and I've had the point blank conversations with doctors about this and no one seems to know what's happening, which isn't unheard of for someone with PD to go through. It got to the point where I was hoping something would show up on the MRI, or something in my blood would be there, or some doctor would know right away what was happening, I just want to know what's wrong with me. It just frightening not knowing and I feel almost shameful for being like this for so many reasons.

Share this post


Link to post
Share on other sites

TexasTom - I tried sending you a PM but it would NOT let me, I wanted to ask you some questions if you don't mind, see if you can PM me when you get a chance.

 

Thank you!

Share this post


Link to post
Share on other sites

TexasTom - I tried sending you a PM but it would NOT let me, I wanted to ask you some questions if you don't mind, see if you can PM me when you get a chance.

 

Thank you!

 

PM Sent.   I had to hit the button three times to get the window to pop up!   Not sure what is going on....

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×