[Jaime K.]

Hi everyone,

I was diagnosed Monday with Parkinson's disease in the ER (of all places). I am so new to this...and not entirely convinced that is what this is...but I thought it best to present this to the folks who would know it best.

Here be my story:

About two months ago I started noticing rigidity in my hands. It was like my muscles went "chink-chink-chink". I had a light tremor in my hands if I extended the fingers, but no tremor at rest. This began in both hands at the same time.

Since then, the rigidity has spread equally all over the body. I can't bend over without the "chink-chink-chink" in my back, or foot, fingers, or any muscle. That has up until now been my main complaint.

My muscles burn if I move them - as if I've been working out. There is a moment of slight tremor right after I move my fingers - then they still. My smile is very tremulous - I can't hold it for more than a few seconds without the muscles in my face trembling. The same is true if I hold an arm out to the side - it will eventually start to shake as if it were fatigued.

I get constant twitching, mostly in my legs, but often in my arms. Not painful, just...there. I also have paresthesia - where both arms will feel like I've dunked them in the fish tank, while the tops of my feet will feel like they are burning. It's a very odd sensation.

The odd thing is, my strength is great. I can pick up heavy things, squeeze things tightly, and have full dexterity in my hands (even though it makes the wrist and arm muscles burn). I play the viola - and can still play, even moving the fingers fast if I need to - it's just holding up the instrument and the burning that is the problem. I can run, hop up the stairs, and move around pretty well (though again, that makes the leg muscles burn - and they do feel a bit heavy).

This Monday, I was in the ER because the stiff feeling had progressed to my face, and I felt like I was being choked by an invisible hand. I told the doctor it felt like there was a mask on my face - told him about all my symptoms the past few months, and showed him my tremulous smile. He made the diagnosis right there - Parkinson's. Naturally being 29 and a musician, I did not take the news well.

My regular doctor had felt the rigidity in my arms two weeks prior. The rigidity is there if I move the arm myself, but it is greatly diminished if the doctor moves it for me - almost fluid. He did not think this was Parkinson's (or ALS). He thinks this is autoimmune.

This has all happened so fast - the progression of symptoms. I know Parkinson's can strike at a young age, and it can move fast, but...I don't know. I have a consultation with a neurologist on Tuesday, and then will have a barrage of tests done the following week at a neuromuscular clinic. I had an MRI of the brain last week which came back clean.

What do you think? I am just a mess with worry.



Jaime

[Evonne]

Jaime,

Welcome to NeuroTalk. The people here have been very helpful to me and very supportive when I didn't know where else to turn.

I am sorry that you were diagnosed at such a young age. You are right to be skeptical, especially in light of the sudden onset. It must have come as such a shock to you and I am sure that you must be having a tough time with all of this. Just remember that it is always good to get a second or third opinion if you have any doubts.

One more thing, I have heard that Lyme Disease can often mimic the symptoms of PD. It would be a good idea to get a test for that. From what I have been told, you should request the Western Blot Test for Lyme Disease. It is the most accurate test.


Your symptoms really mimic my own, with a few exceptions. I have not yet experienced the facial masking. I have twitches when I do smile and I often wonder if people notice or not. Another difference is that I have lost my strength. My legs shake whenever I go down stairs, or do any repetitive exercise. I totally relate to the "chink-chink-chink" feeling that you are talking about. My Rheumatologist is the one that found the rigidity upon examination and he is the one that suggested possible PD and sent me to the Neuro. I have been told that it is called cogwheel rigidity and that is most commonly found in PD and MS. Like you, my MRI was also clear, not indicating MS. The type of rigidity that I experience is just like yours. It is worse when I bend my elbows on my own, without my elbow being supported by anyone or anything...like a counter top. As time has passed, the rigidity has become more obvious. I have that rigidity in every area of my body that bends. I also have myoclonus in my hands. I think that is what tripped up the first Neurologist. He said that wasn't something that he typically saw in PD patients. Since then, I have learned that PD and Myoclonus can go hand in hand.

Here is where we are different...I still don't have an official diagnosis. For many people, the diagnosis process takes a long time. My symptoms began when I was 31 and I am currently 34. The first Neurologist that I saw told me that I had a 50-90% chance of having PD, depending on how I responded to medication. I did improve, but not as well as he thought that I should have. He suggested a second opinion from a doctor at the University of WA. Instead, I opted to see a local Movement Disorder Specialist. He told me that he didn't think that I had PD and took me off of the meds. He wound up telling me that I had a physiologic tremor that was associated with muscle weakness caused by my diagnosis of Fibromyalgia and that it was exacerbated by stress and anxiety. That didn't sit well with me because when I went off of the PD meds, I felt horrible all over again.

I have suffered in silence and pain for almost a year. I was so stiff and ratchety that I had no range of motion in my neck and even my jaw was stiff. I had been diagnosed with TMJ twelve years ago, but never really had any problems with it until recently. Apparently, my stiffness was so bad that it progressed all the way up to my jaw. It also really affected the muscles across the top of my shoulders. They ached and burned a lot. I couldn't stand it for one more day. I finally went in to an Urgent Care. Within a period of two weeks I saw two GP's that both said that my tremor isn't consistent with Fibromyalgia. One of them just started me on a trial of Sinemet about two weeks ago. From what I have been told, it is the "Gold Standard" for treating PD. I have also been told that doctors generally don't like to start young people on it, but my results with dopamine agonists(Requip and Mirapex) were not very good and a GP offered to let me try the Sinemet. I am feeling much better, especially as far as the pain and stiffness. I still haven't seen a huge improvement in the cogwheel rigidity, but I am only taking one pill a day right now. It starts out slow and they increase the meds as needed. I have an appointment on November 13th with Neurologist number three. I have a feeling that I might finally get an official diagnosis soon. Not that I am happy about it, but it will finally put all of the pieces together for me.

My story is a long one and I have briefly touched on it here. If you are interested in learning more about me, feel free to search my name and read more of my posts. It has been a roller coaster ride and a half!

If I can be of any help, feel free to contact me in a private message or here on the message board. Hang in there and let us know how your next appointment goes.

TTYL,

Evonne

Originally Posted by Jaime K.

Hi everyone,

I was diagnosed Monday with Parkinson's disease in the ER (of all places). I am so new to this...and not entirely convinced that is what this is...but I thought it best to present this to the folks who would know it best.

Here be my story:

About two months ago I started noticing rigidity in my hands. It was like my muscles went "chink-chink-chink". I had a light tremor in my hands if I extended the fingers, but no tremor at rest. This began in both hands at the same time.

Since then, the rigidity has spread equally all over the body. I can't bend over without the "chink-chink-chink" in my back, or foot, fingers, or any muscle. That has up until now been my main complaint.

My muscles burn if I move them - as if I've been working out. There is a moment of slight tremor right after I move my fingers - then they still. My smile is very tremulous - I can't hold it for more than a few seconds without the muscles in my face trembling. The same is true if I hold an arm out to the side - it will eventually start to shake as if it were fatigued.

I get constant twitching, mostly in my legs, but often in my arms. Not painful, just...there. I also have paresthesia - where both arms will feel like I've dunked them in the fish tank, while the tops of my feet will feel like they are burning. It's a very odd sensation.

The odd thing is, my strength is great. I can pick up heavy things, squeeze things tightly, and have full dexterity in my hands (even though it makes the wrist and arm muscles burn). I play the viola - and can still play, even moving the fingers fast if I need to - it's just holding up the instrument and the burning that is the problem. I can run, hop up the stairs, and move around pretty well (though again, that makes the leg muscles burn - and they do feel a bit heavy).

This Monday, I was in the ER because the stiff feeling had progressed to my face, and I felt like I was being choked by an invisible hand. I told the doctor it felt like there was a mask on my face - told him about all my symptoms the past few months, and showed him my tremulous smile. He made the diagnosis right there - Parkinson's. Naturally being 29 and a musician, I did not take the news well.

My regular doctor had felt the rigidity in my arms two weeks prior. The rigidity is there if I move the arm myself, but it is greatly diminished if the doctor moves it for me - almost fluid. He did not think this was Parkinson's (or ALS). He thinks this is autoimmune.

This has all happened so fast - the progression of symptoms. I know Parkinson's can strike at a young age, and it can move fast, but...I don't know. I have a consultation with a neurologist on Tuesday, and then will have a barrage of tests done the following week at a neuromuscular clinic. I had an MRI of the brain last week which came back clean.

What do you think? I am just a mess with worry.



Jaime

[Jaime K.]

Evonne,

Thank you so much for your reply. It is heartwarming knowing I am not alone in this confusion and craziness. And goodness, we sound so much alike in our symptoms!

Yes, the shock was...well...a shock. It didn't really sink in immediately when the doctor told me - actually, it was more a relief because I finally had an answer. When the doctor frankly said I would eventually no longer be able to play my instrument (I'm a musician and music teacher - music is my life), that's when the reality really hit. My hubby, also in shock, patiently held his hysterical wife for a good while before I felt steady enough to be discharged from the hospital. This has not been an easy week for either of us, for sure.

I was tested for Lyme disease within the past few weeks, which came back negative. I don't know if it was the Western Blot test, but I will ask my neuro about it next week. Interestingly enough, my regular doctor had also tested me for fibro (just a quick pressure point test) - and I (only) had 8 tender points. So...no dice. Of course, if your muscles are rigid, you're going to hurt when poked!

The facial masking is so strange. It's like my face is covered in heavy wax, with more effort needed to form any expression beyond neutral. Some days it feels more mask-like than others, especially on the left side. A few days I felt terrible pressure in my neck, even choking pain (which is what brought me to the ER). The fear of paralysis is very strong - not knowing what is happening to you, your mind takes over and invents all sorts of scary things. The good news is that I can still smile and make any expression I like. It just takes a little more effort.

I have noticed that my legs are starting to shake a bit going down the stairs. They are a little weak, as if I've been working them out. I can still run, jump up and down, and hop, but I can't help but wonder when I will no longer be able to do that, especially as this has progressed so fast. Cue fear.

The chink-chink-chink is maddening! I've worked 18 years training to be fluid in my motions, and to no longer be able to do that while playing, let along while moving anything for the most basic tasks...maddening. I don't even remember what fluidity is like. It must be nice.

The equally maddening thing is that when this first started, three different doctors thought the rigidity was all in my head. I felt it, and I could clearly see it, but they didn't believe me. I mean, chink-chink-chink! Right in front of them, and they told me I wasn't rigid, and that I was just stressed. Understatement.

Interesting that you also have the aching and burning. It's horrible!

Do you have the paresthesia? My hands/arms and sometimes the face often go "cold" - I don't know if that is a symptom of PD. I just feel like a big neurological mess.

Thank you again for your encouragement and for sharing your story. I may take you up on your offer to message you.


Jaime

[EnglishCountryDancer]

My husbands life is music and dance.Although he does not earn his living through music, it is the centre of his being.He is a passionate proponent of traditional music. In fact he had the honour of being given an award for his services in this field.I say all this, so you know that we understand your feelings although we do not have your worry about finance.He has had P.D for six years and his enthusiasm is not dimished.He still plays and dances, although not to the standard it once was.He can,though still enjoy music and give his advice to those who are learniong. He has turned his attention to organising musical events.He has also become a source of knowledge and much respected.One door closes,you now have to find another door you can open.Do not sit down and give up.Fight this wretched disease all the way.

[Ibken]

Originally Posted by Jaime K.

Hi everyone,

I was diagnosed Monday with Parkinson's disease in the ER (of all places). I am so new to this...and not entirely convinced that is what this is...but I thought it best to present this to the folks who would know it best.

Here be my story:

About two months ago I started noticing rigidity in my hands. It was like my muscles went "chink-chink-chink". I had a light tremor in my hands if I extended the fingers, but no tremor at rest. This began in both hands at the same time.

Since then, the rigidity has spread equally all over the body. I can't bend over without the "chink-chink-chink" in my back, or foot, fingers, or any muscle. That has up until now been my main complaint.

My muscles burn if I move them - as if I've been working out. There is a moment of slight tremor right after I move my fingers - then they still. My smile is very tremulous - I can't hold it for more than a few seconds without the muscles in my face trembling. The same is true if I hold an arm out to the side - it will eventually start to shake as if it were fatigued.

I get constant twitching, mostly in my legs, but often in my arms. Not painful, just...there. I also have paresthesia - where both arms will feel like I've dunked them in the fish tank, while the tops of my feet will feel like they are burning. It's a very odd sensation.

The odd thing is, my strength is great. I can pick up heavy things, squeeze things tightly, and have full dexterity in my hands (even though it makes the wrist and arm muscles burn). I play the viola - and can still play, even moving the fingers fast if I need to - it's just holding up the instrument and the burning that is the problem. I can run, hop up the stairs, and move around pretty well (though again, that makes the leg muscles burn - and they do feel a bit heavy).

This Monday, I was in the ER because the stiff feeling had progressed to my face, and I felt like I was being choked by an invisible hand. I told the doctor it felt like there was a mask on my face - told him about all my symptoms the past few months, and showed him my tremulous smile. He made the diagnosis right there - Parkinson's. Naturally being 29 and a musician, I did not take the news well.

My regular doctor had felt the rigidity in my arms two weeks prior. The rigidity is there if I move the arm myself, but it is greatly diminished if the doctor moves it for me - almost fluid. He did not think this was Parkinson's (or ALS). He thinks this is autoimmune.

This has all happened so fast - the progression of symptoms. I know Parkinson's can strike at a young age, and it can move fast, but...I don't know. I have a consultation with a neurologist on Tuesday, and then will have a barrage of tests done the following week at a neuromuscular clinic. I had an MRI of the brain last week which came back clean.

What do you think? I am just a mess with worry.



Jaime

You do not have pd. checkout upcspine.com read Greg's story. Good luck. Find help, you'll be ok. Ibby

[aftermathman]

PD is diagnosed by clinical observation over a long time, backed up by scans (Dat, Pet).

In my case the neuro watched my progression over 9 months before giving a dx, supported by a Dat scan.

A dx made by a "non specialist" after a limited period of exposure wouldn't seem to be definitive imho.

Get yourself a second opinion from an MDS (movement disorder specialist) is my advise. This dx seems to be premature so try not to worry too much, tough I know.

Neil.

[Koala77]

Hi Jaime. I wanted to welcome you to NeuroTalk, and tell you how sorry I am for the reason that brought you here.

I read your story, and from the bottom of my heart I hope that Ibken is right, and you don't have PD. It sounds like this has come on so suddenly that you don't know what to think, and that's very understandable.

I was pleased to read that you have a neurology consult on Tuesday.... at least that way you'll be well on the way to a definite diagnosis of some kind.

That barrage of tests you mentioned will be over before you know it, and it's only when your neuro gets the results of all those tests, that the pieces will fit together like a puzzle and provide a name for whatever it is that you've been going through.

PD must seem like a scary diagnosis at the moment, and I know I felt like that while I was getting diagnosed with MS, but whether it is or whether it's not, please remember that you've found a wonderful group of people here on NeuroTalk's PD Forum.

If it's support you need, then you've come to the right place. I'm so glad that you found us.

[Jaime K.]

Originally Posted by EnglishCountryDancer

My husbands life is music and dance.Although he does not earn his living through music, it is the centre of his being.He is a passionate proponent of traditional music. In fact he had the honour of being given an award for his services in this field.I say all this, so you know that we understand your feelings although we do not have your worry about finance.He has had P.D for six years and his enthusiasm is not dimished.He still plays and dances, although not to the standard it once was.He can,though still enjoy music and give his advice to those who are learniong. He has turned his attention to organising musical events.He has also become a source of knowledge and much respected.One door closes,you now have to find another door you can open.Do not sit down and give up.Fight this wretched disease all the way.

Thank you for positive boost. It is true that the diagnosis, if PD is what this is, will not prevent me from being a musician and teacher. I will still do both, just in a different way. That is a good reminder. Thank you.

[Jaime K.]

Originally Posted by Ibken

You do not have pd. checkout upcspine.com read Greg's story. Good luck. Find help, you'll be ok. Ibby

Oh boy I hope you are right. This gives me some hope. Thank you for the link - I did poke around on the site. I meet with a neurologist on Tuesday and will have testing done next week. Will keep everyone posted.

[Jaime K.]

Originally Posted by aftermathman

PD is diagnosed by clinical observation over a long time, backed up by scans (Dat, Pet).

In my case the neuro watched my progression over 9 months before giving a dx, supported by a Dat scan.

A dx made by a "non specialist" after a limited period of exposure wouldn't seem to be definitive imho.

Get yourself a second opinion from an MDS (movement disorder specialist) is my advise. This dx seems to be premature so try not to worry too much, tough I know.

Neil.

Hi Neil,

Yes, that is what I had thought about PD - that it usually took some time to diagnose. I see a neurologist on Tuesday, and then will be headed to a neuromuscular clinic the following week for tests. Both hubby and I are rather skeptical about the diagnosis...though we are still very worried as this could be so many scary things, and I'm not getting any better.

What is a DAT scan?


Jaime