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Can someone help me with possible YOPD?


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#1 Elmstreet

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Posted 11 October 2013 - 12:09 PM

Out of the blue one day i felt strange... i felt like i needed to sit down, i realized that my balance was off... this started 8 months ago and i still live with it, it comes and goes... the more im walking then i feel it come on slowly and feel that my balance is not 100%... months passed by from my initial first symptom and now i have developed twiches everywhere, eye lids, cheeks, biceps, calves, thighs, chest, i think my prostate too... ive seen my thumb and pinky twitch before, few times only, ive seen my pinky have a twitch/tremor for a few seconds.. oh and my toes have twitched before... i have a slight pain that i get on the bridge of my nose and also feel like my left side of face feels numb but when i touch it i can feel it normaly... recently i feel that theres something stuck in my throat, feel that i have to make more of a effort to swallow... MRI was normal... All labs were normal... saw a doctor recently and told me it was anxiety.. strange because i dont feel anxious?... he had me walk in a straight line, walk on my toes, checked reflexes... says that its all normal.. for along time i was thinking i have MS but now im leaning heavy on PD... all my symptoms come and go.

 

Edit: two weeks from my first symptoms i saw a doctor who ran all my labs, all normal... i saw a nuero who had me walk, check my reflexes, mri, all normal... at this time my only complaint was my balance.... Mri came back normal, spoke on the phone with him and told me it was anxiety?... i have a hard time swallowing that.

 

Also about two years ago or maybe longer i remember one day at work that i caught my pinky twitching for a couple of seconds and had never seen it do it agian until now at times when my body starts to twicth.

 

I also had a scare last night when i woke up to a slight pain and noticed my right arm had feel asleep and i was sleeping on my left side with not pressure on my right arm.. i remember seeing my pinky twiching/tremoring but im not sure because i instantly started to shake my arm and everything went away in about ten seconds... i was so scared i couldnt go back to sleep, it never came back.

 

i lost my job because the balance issue was driving me mad, i have no insurance at the moment... when im in bed i feel 100% fine, even when i walk around the house i feel fine but when i have to go run to the store or go into a mall, watch a movie i feel that my balance is not 100% and the cordination is not 100%... i do find myself moving a little slower at times when im those areas only because i dont feel confident with my walk... but if i wanted to walk fast, jump out of my chair i could without a problem.. its so strange... i also get this like im going down a fast elevator when i start to feel unbalance.

 

sorry for rambling.... I really think its PD.... any response will be helpful, thank you.

 

Oh and i notice my knees will start to feel weak when i walk at times to, i do notice that i keep them locked because of the feeling of my balance... sometimes i do prefer to keep walking then standing in place, when i stand in place my knees feel weaker.

 

- i tested my writing, looks fine

- arm swings when i walk

- do feel stiffness but iam in bed like 90% of the day

- no tremor

- i dont see any rigidity


Edited by Elmstreet, 11 October 2013 - 01:38 PM.


#2 chelle

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Posted 11 October 2013 - 01:23 PM

Hey I'm chelle! Ok I was diagnosed jan 25, 2013. I pray this is not what u have. You should really see a movement disorder specialist. They say sudden onset isn't common but I too had sudden onset. I also experience the pain and everything is on my left. However I always get numbness on my right. Eveeyone is different but I relate to you that way. Its a long ride though most of us have seen many doctors. I was misdiagnosed for 2 years. I hope this helps.

#3 Jlc

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Posted 11 October 2013 - 02:37 PM

Our situations are strikingly similar. I was also told this was anxiety but also believe it to be pd. I'm 29.


Unfortunately, if it is pd, it seems you will have to clearly demonstrate 2 of the 4 cardinal features before it is diagnosed (at least for most cases I have read about). I have rigidity and tremor at the moment but it's not a resting tremor so I am stuck with anxiety, for the moment.


In my case, I would rather be diagnosed than to have to deal with this for months, maybe years and then finally get a diagnosis. I can and will deal with this, I just want to know so I can move on.


Hang in there and I pray that if it is pd, your diagnosis will come sooner rather than later.


On the plus side, I have read many stories lately where an mds has diagnosed a young onset patient and told them "don't worry, there will be a cure by the time you need one". This makes me feel a bit better.

#4 Jlc

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Posted 11 October 2013 - 02:38 PM

Oh, and Hi chelle!

#5 chelle

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Posted 11 October 2013 - 03:18 PM

Oh, and Hi chelle!


Hi, I haven't been told that but I do hope for a cure. U may have essential tremors. Thats what they first diagnosed me with. However mine is a resting tremor but on some occasions its not a resting tremor ( when I'm pissed ect...) and I drop everything. Sometimes I laugh at myself and sometimes it bothers me. Finding out dont make it easier just relieves the stress of not knowing. I hated feeling like I was crazy. They said over and over everything is normal. I can't say that when ur old enough to need it there will be a cure cause everyday I'm in pain with cramps in my feet and legs. I have trouble doing the things I like. I can't go on the boat fishing cause the bouncing causes pain. I love softball but my legs don't move like they should. I hunt and walking to the stand and climbing the tree is a challenge although I haven't given up on that yet. So I hope for all that have not been diagnosed that yall get the answers and its better then a PD diagnosis. Y'all have a blessed weekend.

I forgot to mention that my gallbladder stopped functioning and my muscles have weakenes so much in my eyes that I have no parifial vision. I get double and blurred vision regularly. Thats it.

#6 Elmstreet

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Posted 11 October 2013 - 03:49 PM

Our situations are strikingly similar. I was also told this was anxiety but also believe it to be pd. I'm 29.


Unfortunately, if it is pd, it seems you will have to clearly demonstrate 2 of the 4 cardinal features before it is diagnosed (at least for most cases I have read about). I have rigidity and tremor at the moment but it's not a resting tremor so I am stuck with anxiety, for the moment.


In my case, I would rather be diagnosed than to have to deal with this for months, maybe years and then finally get a diagnosis. I can and will deal with this, I just want to know so I can move on.


Hang in there and I pray that if it is pd, your diagnosis will come sooner rather than later.


On the plus side, I have read many stories lately where an mds has diagnosed a young onset patient and told them "don't worry, there will be a cure by the time you need one". This makes me feel a bit better.

did you take any medication for the anxiety and if so did it help... i didnt take any because i know it has nothing to do with anxiety... strangely this all started to happen after i finished the nursing program.... a recent doctor tht i saw said i was having a let down?... i just dont see that.

 

im actually scared to death of the diagnosis but i understand your part on having closure... this has been killing my life at the moment... 


Edited by Elmstreet, 11 October 2013 - 03:51 PM.


#7 Elmstreet

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Posted 11 October 2013 - 03:59 PM

another question.

 

since i first started to have my first symptom 8 months ago.... by when should i start to feel the rest of some of the symptoms down the line... is there a certian point where if it hasnt proggressed then maybe its something else?



#8 Jlc

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Posted 11 October 2013 - 05:03 PM

Yes, I am taking something for my anxiety that is caused by the symptoms.

As for the question about symptom onset, I will leave that to someone that has actually been diagnosed.

Yes, I am sick of being told it's all in my head. I had a great life with no stress before all of guys began. Looking back, I have had certain symptoms for a few years and just kept brushing them off or changing how I do things to accommodate the change. As soon as I say something like this to my neurologist she says I'm just searching for stuff.

This is very frustrating. I have so many symptoms including: anxiety, depression, insomnia, constipation, no sex drive, tremors all over my body including even my lips, weakness on right side of body, constant pain on right side of body, noted rigidity in arms, ratcheting, increased dandruff and oily skin, postural hypotension, concentration problems..... And this is still not even enough to merit a sinemet trial. I'm still being told this is all in my head.

This is why I want closure.

Cheers and good luck.

#9 Elmstreet

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Posted 11 October 2013 - 05:19 PM

Yes, I am taking something for my anxiety that is caused by the symptoms.

As for the question about symptom onset, I will leave that to someone that has actually been diagnosed.

Yes, I am sick of being told it's all in my head. I had a great life with no stress before all of guys began. Looking back, I have had certain symptoms for a few years and just kept brushing them off or changing how I do things to accommodate the change. As soon as I say something like this to my neurologist she says I'm just searching for stuff.

This is very frustrating. I have so many symptoms including: anxiety, depression, insomnia, constipation, no sex drive, tremors all over my body including even my lips, weakness on right side of body, constant pain on right side of body, noted rigidity in arms, ratcheting, increased dandruff and oily skin, postural hypotension, concentration problems..... And this is still not even enough to merit a sinemet trial. I'm still being told this is all in my head.

This is why I want closure.

Cheers and good luck.

i see.. i want to say that the twitching is due to anxeity, who knows... i do feel that anxiety is not causing my balance issues.. one last question, what does rigidity feel like or how does it look?

 

thanks for your reply..... stay strong.


Edited by Elmstreet, 11 October 2013 - 05:22 PM.


#10 chelle

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Posted 11 October 2013 - 06:36 PM

another question.

since i first started to have my first symptom 8 months ago.... by when should i start to feel the rest of some of the symptoms down the line... is there a certian point where if it hasnt proggressed then maybe its something else?


Its different for everyone. You many not have any new symptoms for years.

#11 metfan31

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Posted 11 October 2013 - 07:21 PM

Elmstreet & Jlc,

1. PD is different in everyone so it is not certain that we can rule it in or out in this forum.

2. Being diagnosed officially just a week ago after 10 months of symptoms, tests, and doc appts... I fully understand the desire to have a name for whatever is troubling you, but PD is not an answer you want to hear.

3. What both of you have described symptom-wise does not sound like PD for me, and I know my saying that will be no comfort. Elmstreet it is my understanding that balance issue are rare in PD until stage 3 or 4, and you would have more than moderate other 3 cardinal motor symptoms if you were stage 3. I think you Doctor has said anxiety because it sounds like you are having a drop in blood pressure or a sort of panic attack the way you describe it. Jlc, tremors are often misassociated with PD as that is the most obvious symptom for others to see, but the truth is a majority of tremors are benign, or caused from less serious illness. Resting tremor vs active tremor is the first way docs can separate PD from others. PD tremors are typically at rest.

I am not a doctor but I'll give you my medical advise... listen to your doctor, and don't seek answers from online, PD is extreamly difficult to diagnose and there is no sure fire way to do it without an expert examination.

#12 chelle

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Posted 13 October 2013 - 01:20 AM

I can only say we all experience different symptoms. I'm not stage 3/4 and I experience balance issues. They originally thought my PD was also anxiety. They loaded me with adivan and when my tremors didn't go away they sent me to a neuro. Just cause u want to speak to people to get a better idea about what's going on with u doesn't mean u want answers from online. Although online usually diagnosis everything as cancer...I have no problem answering any and everyone's questions on my personal experience. Good luck and God Bless you all.

♥ Chelle

PS. I forgot to add that my tremor is resting tremor half the time. I say that cause my tremors came on suddenly and I was told that's uncommon with PD... they misdiagnosed me with essential tremors. Just over the last few weeks my tremor has become both resting and not resting.

Edited by chelle, 13 October 2013 - 01:25 AM.


#13 chelle

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Posted 13 October 2013 - 01:32 AM

Out of the blue one day i felt strange... i felt like i needed to sit down, i realized that my balance was off... this started 8 months ago and i still live with it, it comes and goes... the more im walking then i feel it come on slowly and feel that my balance is not 100%... months passed by from my initial first symptom and now i have developed twiches everywhere, eye lids, cheeks, biceps, calves, thighs, chest, i think my prostate too... ive seen my thumb and pinky twitch before, few times only, ive seen my pinky have a twitch/tremor for a few seconds.. oh and my toes have twitched before... i have a slight pain that i get on the bridge of my nose and also feel like my left side of face feels numb but when i touch it i can feel it normaly... recently i feel that theres something stuck in my throat, feel that i have to make more of a effort to swallow... MRI was normal... All labs were normal... saw a doctor recently and told me it was anxiety.. strange because i dont feel anxious?... he had me walk in a straight line, walk on my toes, checked reflexes... says that its all normal.. for along time i was thinking i have MS but now im leaning heavy on PD... all my symptoms come and go.

Edit: two weeks from my first symptoms i saw a doctor who ran all my labs, all normal... i saw a nuero who had me walk, check my reflexes, mri, all normal... at this time my only complaint was my balance.... Mri came back normal, spoke on the phone with him and told me it was anxiety?... i have a hard time swallowing that.

Also about two years ago or maybe longer i remember one day at work that i caught my pinky twitching for a couple of seconds and had never seen it do it agian until now at times when my body starts to twicth.

I also had a scare last night when i woke up to a slight pain and noticed my right arm had feel asleep and i was sleeping on my left side with not pressure on my right arm.. i remember seeing my pinky twiching/tremoring but im not sure because i instantly started to shake my arm and everything went away in about ten seconds... i was so scared i couldnt go back to sleep, it never came back.

i lost my job because the balance issue was driving me mad, i have no insurance at the moment... when im in bed i feel 100% fine, even when i walk around the house i feel fine but when i have to go run to the store or go into a mall, watch a movie i feel that my balance is not 100% and the cordination is not 100%... i do find myself moving a little slower at times when im those areas only because i dont feel confident with my walk... but if i wanted to walk fast, jump out of my chair i could without a problem.. its so strange... i also get this like im going down a fast elevator when i start to feel unbalance.

sorry for rambling.... I really think its PD.... any response will be helpful, thank you.

Oh and i notice my knees will start to feel weak when i walk at times to, i do notice that i keep them locked because of the feeling of my balance... sometimes i do prefer to keep walking then standing in place, when i stand in place my knees feel weaker.

- i tested my writing, looks fine
- arm swings when i walk
- do feel stiffness but iam in bed like 90% of the day
- no tremor
- i dont see any rigidity


Have u ever been checked for an auto immune disease and or hypoglycemia??? What u describe sounds like how I get when my sugar gets low. Try and notice if u recently eat carbs when this happens. Cause that spikes and drops sugar very fast. Wgen this happens to me I hae to sit down or may fall. Now I just really watch what I eat before going out.

#14 Sister411

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Posted 13 October 2013 - 08:36 AM

Hello and welcome. I agree with chelle in that you need to see a movement disorder specialist. I know that might be hard to do without insurance. Most likely they will examine you thoroughly and if they think it necessary will prescribe some sort of pd med, then you'll go home and see what results are. You probably need to talk to the neuro about the non motor skill symptoms like apathy, depression and anxiety. Those three in their own right can be tough to overcome. You might be able to get out of bed, get a job and some insurance:)
If the mds doesn't diagnose you with pd then go on and don't look back. I am at stage 3 and let me tell you, it ain't fun. But, it ain't the end of the world either. I really think you need to talk to neuro about apathy and depression, but I'm no doctor.
"She is clothed in strength and dignity and she Laughs without fear of the future". Proverbs 31:25

#15 PatriotM

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Posted 13 October 2013 - 09:37 AM

The very first thing doctors are taught in Medical School is that doctors are gods and that doctors know EVERYTHING.  So, if a doctor can't figure out what is wrong with you, THEY BLAME YOU with the stereotypical "anxiety" diagnosis.

 

The truth is that doctors are not gods and that a significant percentage of them are incompetent.  In fact, 195,000 are killed each year due to preventable, in-hospital medical errors (i.e. doctors that are incompetent).  Keep in mind that this number only reflects 'in-hospital" errors, not the hundreds of thousands of people killed by doctors outside of the hospital or due to adverse drug interactions.

 

What I'm trying to say is that just because some doctor tells you that your symptoms are caused by anxiety doesn't make it so.  If you know that you're having problems that are not anxiety related and your doctor tells you that "it's all in your head" - FIRE YOUR DOCTOR!

 

I was misdiagnosed/undiagnosed for TEN YEARS before finally being diagnosed with Lyme Disease.  I was VERY LUCKY to be diagnosed with PD in one visit to the neurologist.  You can see from this thread that many others were told that they were suffering from anxiety before being diagnosed with PD.  You could go to any forum related to almost any other neurological problem and you would find the same thing.  It is VERY FRUSTRATING to know that something is wrong but have a doctor that can't figure it out.  Keep looking.  Talk to others with similar problems and get their recommendation for a good doctor.  Above all else, don't let some doctor convince you that you're crazy.  And, don't forget to live your life while you're trying to get your medical problems sorted out.  Having some doctor put a diagnosis of PD (or anything else) on a piece of paper changes NOTHING!  You're still the same person and you will still have the same abilities the day after the diagnosis as the day before.



#16 Elmstreet

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Posted 13 October 2013 - 12:59 PM

Have u ever been checked for an auto immune disease and or hypoglycemia??? What u describe sounds like how I get when my sugar gets low. Try and notice if u recently eat carbs when this happens. Cause that spikes and drops sugar very fast. Wgen this happens to me I hae to sit down or may fall. Now I just really watch what I eat before going out.

hi, yes ive been checked for hypogylcemia and was fine.

 

can you describe your balance issue?.... mine feels like it comes from my head and brings this strange feeling on not being cordinated.... say if im walking out of the yard in my house i feel fine but if i go for a walk and walk for more then 200 yards i can feel the unbalance come upon... sometimes i feel that my walk feels different.. i want to say maybe its because im in bed lik 90% of the day for about 6 months and  my body is not used to the long walks?

 

i have never fallen or stumbled.

 

Do your knees ever feel weak?... Do you have twiches on your body?






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