Parkinson's Movement
13,223 members11,817 posts

What were your beginning symptoms?

I have not been diagnosed with PD. I went to a neurologist after experiencing a change in my migraines, and the tremor in my left hand started to increase. The tremor is not due to medications or thyroid. The tremor now feels like it goes up my arm, through my shoulder, and down my back to my waist. It is not real noticeable to everyone, but it is to me and even more so inside me it is very obvious. When I walk my left arm does swing. I do have balance issues, constipation, swallowing problems - but the neurologist wants to take a wait and see approach. I am okay with this, but I am curious if I am experiencing PD at its earliest stage. So I have been searching and reading all the stories I can find to see what everyone else experienced prior to being diagnosed. I do not want to be diagnosed with PD, but with getting no answers as to why I have a resting tremor in my left hand and arm - I feel compelled to at least research what others have experienced. Perhaps I will see my tremor is not like others or I will not see stories like mine. If there is a possibility this is PD - I will at least have documented how it started. Thanks for reading.

41 Replies
oldestnewest

Trimmer in my dominant hand accompanied by mild pain and impaired movement flexibility in my non-dominant shoulder

Reply

Thank you for your response. My tremor is in my non-dominant hand (left) - my right hand does not have a tremor but will shake if I get anxious. My tremor does get worse when I am anxious - tremor is worse, shakiness more so in my arm and back with twitches. Then my right hand might shake. I usually have to make sure I am sitting so I do not fall. Neurologist stated to check with primary and get thyroid checked. I do have hypothyroid, but she said I would not have tremors unless I was over medicated - and I am not over medicated. So my tremor is still a mystery. Thank you again.

Reply

Three main symptoms for Pd young onset is tremor,bradykinesia,rigidity in one side including leg.Your tremor can be essentially tremor,action tremors they have several tremors,so don't hurry with conclusion best regards.

1 like
Reply

By the time PD "declares itself" it's pretty late in the game. Most people here would encourage you to begin nutritional supplementation ASAP. I found information on Benfotiamine to be very encouraging. Detoxification is part of the therapy.

Neurological dysfunction is multifactorial and I feel that toxin exposure is the root cause of nearly all neurological dysfunction. In adult onset disease, genetics plays a small role of predisposition. Genetics load the gun - exposure pulls the trigger. You need to know what was in the bullet.

Be a tenacious advocate for yourself and get every symptom documented in your medical record. There is objective testing available and you should seek it out. I personally won't settle for a subjective clinical opinion.

3 likes
Reply

I am going to look into the nutritional aspect. My husband asked me - if it is PD what would you do at this point. I told him I would research all that I could, start suggested regimens (diet and exercise), and stay positive. I did not realize detoxification was part of the therapy - I will research more on this. Thank you for your response.

Reply

You don't know what creature this is yet. You need to hit it hard from all angles.

If you have access to hololistic/functional medical practitioners, then you should seek therapy from them and reserve allopathic medicine for objective testing and diagnosis.

1 like
Reply

do you have any mercury amalgam fillings in your mouth? if you do - DO NOT detox until youve had them removed properly, or the mercury vapors will go right to your brain. my symptoms started about a week after i had a mercury amalgam filling removed improperly - unable to finger tap (in my toddlers music class), dragging of left foot, unable to swing left arm, extremely slow movements. it looked like i had a stroke. you can read my profile for more details.

Reply

well said! i believe its toxins, especially mercury. and i think the increase in pd cases is because of all the folks that are in their 50s and older have had all those mercury amalgam fillings in their mouths for a long time, and at some point its just the straw that breaks the camels back.

Reply

Thank you for your response. I am looking up mercury amalgam fillings information.

Reply

Micrographic, constipation, slow movement. After much investigation and trying different non-Park med solutions I have happily settled on high dose thiamine HCL. See my profile, posts and replies.

5 likes
Reply

Resting tremor on one side is very strong evidence of PD. I had that early but my very first symptom was cramping of my 3rd and 4th toes on the affected side. Also insomnia - waking up early AM.

Early diagnosis is important so you can get started with interventions. Concur with RoyProp on the high dose thiamine.

4 likes
Reply

Thank you Park Bear - I am reading RoyProp's information now.

1 like
Reply

How is your sense of smell? I am surprised your arm swings normally as that seems to be quite an indicator. How even is your face? I can now see the stiffness in my left side from photos of a few years ago.

Reply

Smell is hard to say - I do have a sense of smell. I can smell bacon cooking. I seriously do not know if my sense of smell has diminished. Do you totally lose your sense of smell or does it just diminish slowly?

Reply

Oh and stiffness in getting up from the couch and chairs have been a problem this past year. My husband and I kid each other about the grunting we do. We are 56 and it is hard to believe we are getting old. Is it getting old or is additional stiffness adding to the other symptoms?

Reply

I can smell bacon but I've noticed over the past few years that my sense of smell is much worse than my family's. It got better with mannitol and then I realised how poor it had been before.

I am also very stiff getting up from chairs etc but I think that's also general ageing!

1 like
Reply

My husband's first symptoms were balance and tremoring on both sides, at least by the time we noticed it, I also notice exertion his head would wobble. After seeing that I mentioned that I thought he might had PD and everyone poo pooed me. Then he went to Dr. and she did the normal office tests on him including walking up the hall and as she manipulated his arm he had pronounced cogwheeling pronounced on the spot that he had PD and started him on Sinemet.

Reply

Thanks for the first symptoms descriptions! I only have it on the left, it is not real noticeable and I feel it more inside my body that it is noticeable visually. My head does not shake rather my neck feels like it is shaking. And I do not think I have cogwheeling yet.

Reply

Ask your Neuroligist what experience he has with PD and does he think you should see a "Motion Disorder Specialist" He may tell you that his background is treatment of strokes and refer you or he may say he is confident in being able to diagnose . Either way you can rest easier. Try and relax, stress makes PD worse

3 likes
Reply

I agree with GymBag. You shouldn't really start a strict regimen for something specific until you know what it is. A movement disorder specialist would be good to find soon. It usually takes awhile to get an appointment. Good luck & keep positive!

3 likes
Reply

Absolutely see a movement disorders specialist. The neurologist I first saw was reticent to diagnose, but the MDS was much more helpful. My dad had PD, so when I started having a clumsy left hand at the computer I immediately associated it. Took another year and a half to get diagnosed. Clumsiness became fasciculation on the back of that hand, then resting tremor, left side only. Tightness in muscles of thigh and forearm on that side. Loss of smell has been progressive, it comes and goes. Some exercise induced dystonia in left foot. My arm still swings but less than on the right side. Stress makes it all worse. Before I had physical symptoms I had depression/anxiety and noticed a substantial reduction in my tolerance for stress.

The MDS can check you for cogwheeling, that's harder to do on your own. Even if you want to wait for diagnosis before starting a supplement regimen, absolutely get going on exercise. That's what helps me more than anything, and it has been shown to slow and perhaps stop progression in some cases. And it will help no matter what is causing your symptoms.

2 likes
Reply

Thank you Rebtar. Hearing the stories of the before diagnosis helps me to see I have a lot of work to do, but there is a lot of work I can do. The progression of how you lost you sense of smell is helpful.

Reply

Lost smell early on, then developed bad insomnia and then got very anxious is public speaking events. Writing went and then I a pain in my shoulder. I tried to tell them that I probably had PD but they went ahead and operated needlessly anyway!

Reply

I developed sleep issues over 2 years ago. Finally I just succumbed to it. I am exhausted anytime at night before bed, but wake by 2am and can literally stay up. I stay in bed as long as I can but some nights it is better to get up and do stuff. Thank you for sharing.

Reply

My symptoms were a tremor in one side, a slight but noticeable change in the way I walked, a bit of slowness and most noticeable, the infamous PD 'blank stare'.

A tremor that goes up your arm et al is a new one to me. I am not a doctor but that sounds like something else... for example a mini stroke.

i had a brain scan as part of my diagnosis... it came back clear which eliminated other possibilities.

PD does not show up on brain scans but other things do.

Best thing to do is to see a movement specialist neurologist who is current on PD because there are med that slow progression if it is caught early.

PS I have PD but have not loss my sense of smell. PD cases are like snowflakes. No two cases are alike.

Reply

4000nights - your first sentence is what I am experiencing. I would have to clarify the tremor is in my hand, wrist, upper arm, neck and sometimes down my back. My head does not shake per say, but when my neck shakys it feels like my head. I had the CT and MRI of which they say look fine. Some white matter but they are not concerned. I am going to double back to see if the neurologist I saw has a background as a movement specialist. Thank you for responding!

Reply

Let me clarify. My tremor is in my hand only. A tremor in the hand only on one side is a tell tale sign of PD. I have never heard of a tremor in the hand, wrist, upper arm, neck and sometimes down the back as a PD symptom but just googled it and others have reported that so that is a possible indicator.

Another tell tale sign is a softening of the voice. Has your voice gotten softer?

Do you have vivid dreams?

So is the blank stare. Do you have a blank stare at times?

Can you stand on one foot with your eyes closed for four seconds?

I am concerned that your neurologist is saying 'wait and see'. Bleep that! If it is PD I would want to be on Azilect now. One way to confirm PD is to go on the meds and see if they work.

PS All tremors get worse with adrenaline which comes from fear and anxiety.

PPS I should have said this up front. I was diagnosed 4+ years ago and put on Azilect and later Sinemet. I have had minimal progression and lead a full and normal life. If treated right and treated early, PD is far from a death sentence. Find a PD neurologist.

1 like
Reply

Hello! What are the changes to your migraines?

Reply

My migraines usually were the a small mass of blurriness which made its way across both of my eyes. The blurriness would turn into sharp geometric patterns as it went across my eyes. Once the mass passed I would end up with a headache would start. Then I would have to do the typical take medication, try a cup of coffee and then lay down in a dark area.

The last so called migraine was like a stroke, but the ED declared it was not based on CT and MRI. Vision was blurry, slowed speech, dizzy, nauseous, walking was an issue because of a loss of balance. Afterwards a headache the rest of the day, felt weak for a week and then I noticed the tremor more. Especially when upset the shaking would get worse - more tremor throughout my arm and down my back - to the point of cramping. The tremor basically hums in my left hand, wrist, neck. Before my husband did not notice my tremor and now he admits a change.

Went to neurologist and she did the office tests. She would not classify it as PD, but to monitor it and come back if it gets worse.

Reply

I used to get migraines with visual disturbance and stroke like symptoms. Half my face and one arm would go numb. Also my speech came out as nonsense. However lately I have been getting terrible headaches, but no other migraine symptoms, where as before I never got any pain at all. Are you in the UK?

Reply

I live in the United States - South Dakota. Interesting you said your speech came out as nonsense - same with me. When they said in the Emergency Department they were looking for stroke - I cried and thought at 56 I am old. I never really thought being 50, or 50 something, was old.

Reply

It’s not, it’s middle aged😊 I had my first stroke-like migraine at 17. I went to the doctors and she just said it was a migraine and that was that. I’ve never had them looked into. They could be strokes for all I know.

Reply

My symptoms are similar to yours. Internal tremor, sleepless nights, constipation ( I think my profile has the full list). Mostly resolved by Mannitol. You have come to the right sight I believe. Caveat - I am still not diagnosed, in part because I want the illusion that I might not have this to continue.

Reply

Thank you for posting. It appears prior to stage I or diagnosis - most experienced a twitch/slight tremor, balance issues, sense of smell issues, etc. I do not want to be diagnosed with PD, but if my symptoms continue to worsen there is a chance I will. I just want to be of help to researchers and unfortunately I will not be able to unless diagnosed. For months now - when I wake in the morning I wait for a couple of minutes thinking maybe I won't have the tremors today and it was all about something I ate.

Reply

There is also a balance between waiting for a diagnosis and starting self treatment. But I would advise going through many of the posts here, checking out a few of the profiles. Many here are less than convinced of the medicines that are generally prescribed for Parkinson's as many of them have horrendous side effects. It might be an idea to get some Mannitol - as an osmotic diuretic it would resolve constipation issues in any instance, but you have to be careful of the dose. And exercise as much as you can - you should aim for 45 minutes cardio every day. Get a stationary bike - second hand these are not expensive.

How is your expression - does your face look more grumpy than you remembered? I can see when I have a good and bad day in my face.

Reply

Has your Neurologist offered you a DATScan? This scan is the most accurate type of imaging techniques for PD diagnosis and differentiation between PD and other similar neurodegenerative diseases.

Reply

I was not offered DATScan. I will look into this! I do see there is some research on a blood test. It would be so helpful is there was a blood test. Thanks for responding.

1 like
Reply

As far as I know there is no blood test to date for the PD diagnosis. However there are loads of ongoing researches interms of measuring some markers in the blood related to PD but just in very small scales.

I am 49 with very light symptoms and was diagnosed a year ago through DATScan.

Reply

I am 56 with apparently light symptoms too. I am so sorry your were diagnosed, but glad you were so you can start dealing with the diagnosis. Right now I am just a mystery as to why I am experiencing what I am experiencing. I am working on the process of elimination of other possibilities. I need to relax and see what will happen.

2 likes
Reply

Neurologist did not think I had pd. My symptoms were no tremmoring but everything else, sense of smell lost, feeling like I could fall, extreme stiffness, slow getting out of car etc etc. So he tried low dose carbo/Levo and I felt better very soon after my first dose. That was more than 3 years ago. Also now take Azilect. Doc said I do have pd because the meds work. For those of us who do not tremor this is a tough one to diagnose. Frustrating for patient more than doc. I'm so grateful doc had the sense to try the meds out as I'm not a fan of falling! Some do not recommend dat test. I did have MRI and a few other tests along with the movement disorder tests from my Neuro.

Reply

Thanks for you post Opt8. I still have tremor, stiffness and the feeling like I could fall. I saw neurologist in February and she said she will see me in 6-12 months to see how my symptoms are then. She is not a movement disorders specialist so I am wondering if I should consider going to another neurologist. I am working on some degenerative disc disease in my c-spine and the physical therapist thinks this is the reason for my tremor. I think the therapy needs some time, and I know I need to keep moving to matter what the issue. Well I am in a holding pattern right now to see how the symptom progress or not. Some days my symptoms are real noticeable to me and I have to admit I have good days where the symptoms are not as noticeable. I have not figured out what makes a good day or a not so good day.

Reply

You may also like...