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Superdecooper

New guy here - a journey I'd like to avoid

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Hi gang,

I'm new on this board and could use some guidiance and feedback.

I'm in my mid-50s and haven't been diagnosed with PD, but i wanted to share my story.

I went to the neurologist this week to find out what's going on with my right hand tremor. It started about 18 months ago, my wife noticed it about a year ago, and i paid attention about 6 months ago when I started dropping things and noticed my handwriting was starting to look scrunched up on some days.  Normally, I have a flowing artistic signature, but some days I cant manage more than just a barely legible scrawl. I have on going spine and shoulder issues and thought that might be the cause.

So, i took my MRIs - brain and spine - to the neurologist, plus a list of medicines and filled out a questionnaire that listed all the medical issues I'm dealing with. Trying to fine out if i just have wear and tear based arthritis, why so many bone spurs, and why the hand keeps jumping around - maybe its my worn rotator cuff muscles, maybe its my cervical fusion, maybe its scar tissue.

The neurologist did a bunch of exams with reflexes, asked me to draw a spiral circle - way harder than i thought - asked me about my sexual health, when the tremors took place, recent blood tests, and discussed thyroid problems and possible Parkinson's disease.

He sent me out to his nurse to scheudue a bunch more tests, including an EEG and some type of doppler test. I think he wanted me to come back and see him for a brief chat after the tests were scheduled - I didn't. I think I must have misheard him about a second chat. But i have to go back next Monday for the nerve EEG brain test  and the Doppler test, which is some kind of tilt table transcranial test thingy. Like the physical therapist, He said the tremors are not related to my spine and shoulder issues.

I'm determined not to freak out here. Mrs. Supes says don't worry. I'm glad your taking care of yourself. We'll get through this too. (She's a good wife. I love her.) but i am freaking out a little. I have to stop looking at Dr. Google because Ive notice that some of the symptoms that I've big ignoring (vivid dreaming and night movements while sleep, problems with sex, night sweats and sleep apnea) may also be common to Parkinson's in some way. 

I'll keep everyone posted after I get these tests done over the next two weeks.

what do you think?

Wishing everyone a pain free day.

 

-S

 

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Hi Superdecooper, some of your symptoms are similar to that of PD,or parkinsonism,meanwhile complete your all tests and don't forget to ask for a DAT scan.It may not be necessary if you are seeing a very experienced neurologist or preferably a movement disorder specialist.Good luck and welcome to the forum.

 

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Super,

At first, it is overwhelming to say the least. You need to go through the grieving process leading to acceptance. Once in the acceptance place, you will encounter new symptoms that will force you to go through the process again. We can only find peace in the acceptance mode. Living in denial, anger, depression or compromise is more difficult. I deal with PD by 1. keeping a positive attitude, 2. looking for the right medication cocktail, 3. exercising, 4. resting, 5. eliminating stress, 6. staying warm.

Having PD is like a new life you have not chosen. Forget the old one, or at least detach from it otherwise nostalgia will lead to frustration.  Try not to look too far in the future as this will lead to anxiety, causing stress which will exacerbate symptoms. Be grateful for the positive aspects present in your new life. It is a marathon, save energy, don't rush. Be systematic and analytical.  You will become the PD expert for yourself.  Don't compare too much to others as we are all affected differently and progression is different for all.  The future has too many unknowns, stay in the present as much as possible.

 

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5 hours ago, Superdecooper said:

I'm guessing that the only reason to get these test is to rule out PD or parkinsonism. Is that correct? 

I'd say that the tests are to rule out other more serious things, like a brain tumor, MS, etc.  Once all that is ruled out, then they will be able to more seriously consider PD.

Even if you are diagnosed with PD, I wouldn't freak out.  Millions of people each year get a diagnosis MUCH worse than PD.  You can still live your life relatively normally with PD.   

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I see lots of folks reading this series of posts, but few people commenting. Please do me a favor a drop a few words of encouragement and advice. I could really use it.

-s

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This forum has loads of information.  Please do searches for what you want to know and chances are you will find a few posts with what you are asking.   People join and asks basically the same questions over and over.  Some people repeat their suggestions and new people give their input so there is a lot to look into.  Good luck.

 

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On 9/15/2017 at 11:29 AM, Superdecooper said:

I'm guessing that the only reason to get these test is to rule out PD or parkinsonism. Is that correct? 

Yes, your doctor is running these tests to determine what is wrong or rule out diagnosis that can be confirmed through these tests. Parkinson's is a tough disease to diagnose and is usually done by process of elimination and clinical observation. If your diagnosed with PD, you want the doctor to be sure he's right. It's not the end of the world having PD.  I've officially had PD for about 3 1/2 years now. My wife suspected it about 4 years ago when she was researching it in regards to her mother.  The more she read, the more she determined that I needed to be seen by a doctor. Her mother does not have PD. To this date, only a handful of people know I have PD. 

I hope you don't have Parkinson's. Listen to Mrs. Supes, she's 100% correct, don't worry about it.

Dave

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Hey Miracleseeker,

I've been looking over the forum and have got a lot of my questions answered. Seems like a lot of the health issues that have cropped up in the last five years are mentioned by posters. That certainly doesn't make me anymore or less certain about my problems, but I do have a better idea of what to ask the neurologist tomorrow after the first round of tests. 

I haven't been paying any attention to whether I have a resting tremor becasuse the only time I really paid attention is when I tried to hold something and then my hand shakes or I drop it. But this weekend I have been at least watching to see if anything is happening. I have noticed my finger and thumb jumping a bit, but not consistently. 

DAveN - the doctor also wants to do a nerve conduction test on both my arms and also my legs. I've seen some folks mention that on this board. Durning the initial visit he asked me a ton of questions about my health records. I didn't tell him that Ive been fighting mild depression over the last year. Ive also been actually treated for depression in 2011-12 but it was situational depression based on ongoing health issues, and in 2014 based on a sibling's death. I'm not a fan of lyrica or  Cymbalta. They sent the vivid dreaming and night kicking into overdrive. 

This weekend I have noticed that there are certain things Ive been doing to deal with the tremors and shaking hand. I noticed that I've been holding my phone with two hands when I use it. I also hold items I'm carrying close to my body, like books or plates, or coffee cups. I didn't know I had made this a habit.

I also realize that I havent really been sleeping that well at least for the last year. 11;30/12 to 4/5 am. I didn't know that was something that can be an issue. I chalked it up to the pain meds I'm taking, but it seems to have gotten worse in the last year or so. I've been trying to go to bed later and later so I can sleep until 7 am cause who wants to be up in mid morning, that's way too early.

The other thing i wanted to mention is apathy. I'm a professional writer and we call apathy by another name: writer's block. When you cant focus enough to put your thoughts on paper, or don't want to or don't care about getting published. I just dealt with this almost the entire month of August. Like my brain just said, we are not being productive... or you can make me start this but I'm not going to finish it. That was awful.

Who knows... maybe its not PD, maybe its some other brain problem. I'm trusting my neurologist to figure it out. In the meantime, I will try to just go about my daily living. 

Edited by Superdecooper

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FWIW.

 

Most of the tests being ordered are to rule out things other than PD.  The nerve conduction test is to rule out ALS (aka Lou Gehrig's disease).  The MRI's were to rule out MS and tumors.  Not sure what the doppler test is related to.  When I was first going through the process they also did a combo blood test and urine test (where I had to collect my pee for 24 consecutive hours) that was to rule out Wilson's Disease which is a rare copper metabolism disorder.  Being as you're over 50 that is probably why they aren't doing that, as Wilson's I guess is almost always an under 50 diagnosis.

 

Before I was diagnosed I started to notice I was dropping things a lot more with my left hand than I ever used to.  That is more related to bradykinesia (slowness of movement) which is one of the "cardinal symptoms" of PD, rather than tremors.  My tremors are very much exclusive to my hand being otherwise at rest.  

 

Good luck with getting some answers for your symptoms.  As others mentioned, PD is hardly the worst thing you can turn out to have.  One thing to keep in mind is that most people that get PD die with it, not from it.  And, even if you do have PD you will likely have many years with it really being little more than an annoyance.  Everyone with PD experiences a different age of onset, mix of symptoms, reaction to the various meds to treat PD, rate of progression, and ability to cope with each new phase.  So while it's good to read of other's experiences don't let one person's bad experience with one aspect or another freak you out.  Chances are you won't have the same issues.  But, also, even if most people have a good experience with, say a particular medication, that doesn't mean it will work out well for you too.

 

Meantime, while you await answers from the doctors, if you aren't already, get on an exercise program.  It is the one thing clinically proven to slow PD, and if you don't have PD after all you have at least gotten a good start on the road to better overall health and fitness.  Exercise is also something proven to help with depression and apathy.  If you want a little inspiration head over to the Young Onset part of this forum and read my thread on Summer Adventure Season.  

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Thanks, Stump.

I really appreciate your insights.

Very helpful. actually, everyone who's responded has been helpful. This has been an interesting experience. I'm not sure what the future holds, but I'm going to remain hopeful.

I will check back in later today if I get some more answers. 

One thing's for certain, my awareness about this disease has certainly been aroused. That's a good thing. In general, nothing ever happens by coincidence. I'm sure this experience will be helpful to others.

gotta run. i dont want to be late.

-s

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Hi guys,

Just checking in here after two hours of testing this morning. I had a nerve conduction test - ouch but thankfully brief - on both arms, done by a technician, and an EMG test of my muscles in both arms, done by the neurologist. Also had the Transcranial Doppler/ultrasound test on the vessels in my brain, eye and throat, done by a tech. 

The good news,he said, is that i passed the first two tests. However, I  didn't get results from the third. The neuro said I dont have carpal tunnel syndrome and something else that had a long complicated name, possibly ALS. He did say that the nerves on the left side of my neck were not working correctly - i dont remember the word he used - might have been damaged. Also, that I have pretty significant weakness in my right muscle, as evidence by my inability to push his finger in different directions even  though I was using all the strength I could muster.. 

He said my cervical fusion was not totally successful and that I was still suffering/impacted/from the fusion which wasn't totally healed. I had the cervical fusion in 2004, so this was news to me. He said the nerves around the fusion were about 80 percent recovered, and that the nerve had rejoined the muscle, just not all the way.

The Transcranial Doppler ultrasound test was uneventful for the most part, except for when she examined the back right underside of my head. My right hand, the one with the tremor, started bouncing all over the table like I was playing drums. That was too odd. She said it's possible she was examining a vessel in my brain that caused the reaction. That was too odd. I didn't talk to the neuro after that, but the tech didnt find anything that warranted bringing the doctor in for an immediate discussion.

Oh one other thing: was my foot supposed to be cramping when i was getting the nerve test. Super odd.

Next week, I get another nerve conduction test of my legs and the EEG test, which he said was like a sleep apnea test, but only with about 20 leads to test brainwave or electrical activity.

I did discuss my ongoing sleep apnea with the neuro and also the vivid dreaming and apathy..He just listened and asked a few follow up questions.

Maybe after next week's visit he will be able to give me an idea of what's going on. I hope so.

..

 

Edited by Superdecooper

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Another question:

Should I Be expecting an answer to what's going on after the next round of tests or are there other things the neurologist might try to rule out before giving me an answer?

 

 

 

Edited by Superdecooper

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'Tis a process.  You might get answers now, or you might not.  Depends on what the tests showed, what else your doc sees that gives more questions, and how conservative (s)he is with diagnosing.  Sorry for the non-answer, but that is the reality.

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thanks, for that answer. helpful.

Another two questions...

I had not been paying attention to my hand tremor, except for when I noticed that I had dropped something or had to hold onto something extra tight. Now, that i'm paying closer attention, I see a fine tremor in both my right thumb and first finger. If I rest my hand on my desk or on my mouse, or use the keyboard, I can see my fingers trembling and my index finger is definitely jumping around. I was determined to ignore that when my wife asked me about it so I never paid attention. Now I cant miss it.

When you were diagnosed was it a very obvious tremor or something very small and fine?

When I get a massage, the therapists have all said something like - 'what are you doing to you hamstrings and back. They're like concrete.' My orthropedic surgeon who gave me an injection in my lumbar spine also remarked, your muscles are super dense. It's difficult getting the needle in here. (I'm not doing anything. I swim some, and spend a lot of time walking, standing and sitting.) 

Of course, I paid no attention to that - because I just didn't think anything of it. Just trying to stay out of pain because of problems with my spine. 

Is muscle stiffness like this a symptom of PD and should I bring it up with my neurologist? 

-s

Edited by Superdecooper

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My tremor was pretty obvious.  It's not just a finger that slightly tremors.  It's more like a wrist tremor as my whole hand tremors in a motion that is rolling about the axis of my forearm.  Sometimes my foot will also tremor but that is far less common.

 

Not sure about muscle stiffness being a symptom, though I do tend to have more of that on my left (affected) side than my right (dominant) side.  

 

Joint rigidity however is a symptom.  Mostly seen in wrists, elbows and knees on the affected side.  Though I suppose any joint can be affected.

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Superdcooper,

Most of the time I have a very fine tremor in my index finger and thumb. My tremor actually started with my right foot. Drove my family nuts when watching TV. Of course we never thought anything of thinking it was just a habit I developed. I didn't seek a diagnosis until it was so difficult moving in the morning. My muscles are super tight, which probably also contributes to my back problems.

Dave

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I was diagnosed on the very first visit to the neurologist.  Although I didn't know what was wrong prior to going to the neurologist, it was obvious something was wrong.  I had a very obvious tremor in my left hand.  The neurologist did a thorough exam and watched me walk.  Then, he matter of factly said "you have Parkinson's Disease" and began writing something on his computer.  I wasn't really surprised that I had PD as I knew something was seriously wrong, but I was shocked that he diagnosed me with something this significant so quickly.  I asked him how he knew I had Parkinson's.  He said that my tremor was the correct frequency for PD; that my left arm didn't swing; that I had a "PD Mask"; that I had cogwheel movement in my arm; etc, etc, etc.  There was a poster on his wall with the symptoms of PD and I had almost every one of them!  That's how I knew he was right.  I didn't know that my left arm didn't swing.  I never heard of a PD Mask.  I didn't know what the symptoms of PD were (except tremor of course).    

Edited by PatriotM

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Stump and DaveN,

how long did you wait to go see a doctor? Were you having smaller problems that you ignored and only went because one bigger problem was unavoidable? 

And finally, here's something else I've noticed.

My wife for about a year has been making comments about why I don't smell obvious stuff like garbage, some mold, mostly, but some other stuff.

 Of course I ignore her because I'm thinking, wow she has a super sensitive nose. She should get that checked out.  

At least three times in the last year she has said, I can't believe you don't smell that. 

So I went out and bought a plug in air freshener and put it in the garage and living room so she could stop saying it  

Its probably nothing, right? Just a coincidence probably. 

 

 

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I first noticed my tremors in November 2014.  Didn't even say anything to my wife until January 2015, and didn't see my family doc until March.  Waited until almost May to ask for the referral to a neurologist, and saw her at the end of June that year.  She said it looked like PD and had I been 68 instead of 38 she'd have given the Dx right away.  But she had me go through all the tests to exclude other diseases and I got the formal Dx in late September 2015.

 

Sorry to say this but loss of smell is a hallmark of PD.  I can barely smell bad milk, rotten meat, garbage, dirty diapers, and so on.  Most folks on here will say similar things about their sense of smell.

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4 hours ago, Superdecooper said:

Stump and DaveN,

how long did you wait to go see a doctor? Were you having smaller problems that you ignored and only went because one bigger problem was unavoidable? 

And finally, here's something else I've noticed.

My wife for about a year has been making comments about why I don't smell obvious stuff like garbage, some mold, mostly, but some other stuff.

 Of course I ignore her because I'm thinking, wow she has a super sensitive nose. She should get that checked out.  

At least three times in the last year she has said, I can't believe you don't smell that. 

So I went out and bought a plug in air freshener and put it in the garage and living room so she could stop saying it  

Its probably nothing, right? Just a coincidence probably. 

 

 

My wife was researching Parkinson's in regards to her mother because we suspected she might have it. Her mother's sister has PD which was the reason for the suspicion and some symptoms. Her mother's issues are anxiety related which she has been battling all of her life. During my wife's research, she began to suspect that I might have PD. My right arm didn't swing, I was moving like a snail when I got up in the morning, the tremor in my foot, and I had very little sense of smell. It took several months before I was seen by a Neurologist. By that time I had a light tremor in my thumb, index and four finger. He suspected Parkinsonism mostly because my tremor was a little fast. I did a host of tests and that's where the train went off the tracks.  My immune system was statically in the toilet.  They re-ran the blood work with the same results. I was sent to an Oncologist to determine what form of cancer I must have because something had to be destroying my immune system.  After a lot of tests to include a bone marrow biopsy, I was declared healthy with the exception of a compromised immune system.  It's still compromised to this date. My Oncologist said I should be sick all the time, so whatever I'm doing don't stop. I only odd thing that i do is eat 2-3 oranges a day.

To make a long story short, my neurologist wouldn't commit to a diagnosis and his appointments were about 5 minutes each time.  He was so busy that he didn't even remember me from the previous appointment.  My wife's aunt suggested her doctor, so I switched to him.  He diagnosed me after a 2 hour appointment with him and one of his fellows. We scheduled a DaT Scan to confirm which came back with some loss on the left side.  I still had doubts, so he did a Sinemet challenge in his office. It was like night and day. After an hour, my lite tremor was gone, stiffness was gone, it was basically life altering. 

Dave

Note: Agree with Stump, Loss of Sense of Smell was probably my first symptom.

 

Edited by DaveN

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Wow

That's an incredible story, DaveN. Doctors are always ruling stuff in or out -- regardless of how much testing it requires on your part. I guess better safe than sorry. I've had the bone marrow test already (ouch time!) when docs were trying to rule out leukemia (didnt have it), but I never had a spinal tap. 

Both my white blood cell count and my heart electrical activity shows up in tests in ways that make doctors think I am either a cancer patient or having a heart attack. (I'm not).

Go figure.

Anyways, I'm not too worried about the smell thing. It seems way too inconsistent to me to bring up with the doctor. 

-s

 

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Frustrated this morning. Trying to hold a comic book and I can't keep the pages still. So I just put it on the table and read from there. Oh wait then I put pressure on my cervical spine. Not good. 

Looking forward to getting to the bottom of this. 

In the meantime, Thanks for providing a place for me to vent. 

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