Not parkinsons, but what?: After going... - Parkinson's Movement

Parkinson's Movement

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Not parkinsons, but what?


After going through multiple tests to determine if I have Parkinsons, all tests came back negative.  But sadly, the tremors on my hands, arms and head continue.  Also, I still lose balance as well as continue being dizzy.  Any suggestions?  What do I have?

35 Replies

Consider the "Differences Between Essential Tremor and Parkinson's Disease" and see if either conforms with your symptoms:

In2Az in reply to whack-a-mole

Thank you for responding.  The information you passed on was informative and answered my question.  Yes, I shake tremendously at rest or during movement. Taking propranolol is helping, but not enough.  Also, these tremors do are in the family history, mother, sister, myself and now my two sons.  I will take the time now to learn more about Essential tremors.  Many thanks.

LindaP50 in reply to In2Az

A nurse told us about Full Spectrum Hemp Oil for Parkinson's people and for people with tremors (essential tremors or tremors from Parkinson's or Parkinsonism).Hubby tried and was able to reduce his PD meds (cardopa/levodopa) from 6 daily down to 4 daily.

Have doctors tried to put you on Sinemet to see if you are responsive to it?

One thing that differentiates idiopathic Parkinson's from atypical Parkinson's is the response to Sinemet.  Idiopathic PD patients respond to levodopa and atypical PD patients do not.

In2Az in reply to silvestrov

Thank you.  No, I have not been on Sinemet, but will asked about this med.  I just searched the comparisons of idiopathic  PD and atypical PD.  This further information puts more and more light on PD, tremors and shaking.

arwenmark in reply to In2Az

could be essential tremor and something to do with your inner ear. That could cause the dizziness and loss of balance. Not necessarily just one thing.

In2Az in reply to arwenmark

Pretty sure you hit it right on the nose, or rather ear.  I am deaf in both ears, have no hearing in the left ear and also have permanent nerve damage to the left ear.  This causes the imbalance and dizziness.

Beckey in reply to silvestrov

Silvestrov, how long do you wait for a response before concluding sinemet is a no-go?

silvestrov in reply to Beckey


"Response has been observed in one day, and sometimes after one dose. Fully effective

 doses usually are reached within seven days as compared to weeks or months with levodopa alone."

In2Az in reply to silvestrov

Is this dose a constant daily supplement, 7-days a week?

silvestrov in reply to In2Az

Yes...a week of continuous Sinemet. 

Beckey in reply to silvestrov

Yikes. It hasn't helped me one iota after nearly a month. But I have all the PD symptoms (other than my sense of smell is still all there), and my neuro is certain it's PD

park_bear in reply to Beckey

How does  your neuro explain the C/L not working?

Beckey in reply to park_bear

I emailed her, "My tremor got worse when I started on the meds," and she responded, "C/L does not increase tremors." Then a few days later she advised me to cut my dose in half, which I did.

park_bear in reply to Beckey

Here are some additional possibilities:

“if a person’s symptoms do not respond to dopamine replacement therapy, or only do so for a very short period of time, then, it is believed they do not have typical Parkinson’s, and instead may have PSP, CBD, or MSA.”

It’s a sad day when posters on the internet do better than your MD.  Just because someone is affiliated with a major teaching institution does not automatically make them good, or even competent. One of my worst physician encounters was with one such individual.  Time for a new MD!

Hikoi in reply to park_bear

Parkbear those are all parkinson plus conditions.

I do doubt your conclusion that posters on here know more through internet searches than doctors. Doctors will have knowledge of these conditions, they are ones that are very hard to diagnose and mostly untreatable.

Drs do not diagnose psp, chd or msa etc lighty and it can take 2-3 years to really be sure. These people make up most of the people "mis diagnosis" with PD.

park_bear in reply to Hikoi

Wow yes indeed they are. No idea why I seem to have missed that when I posted it.

What Beckey's MD apparently did ignore though was that she was taking two medicines known to produce tremors.

ronn in reply to Hikoi

Hikoi and Parkbear, You both make vaiid points. Please allow me to interject a few thoughts from the "far side Most medical students, early on in their training, are exposed to the instruction, "Primum non nocere", which translates in English to "First, Do no harm". Then, during his/her career, they spend much of their time sitting at a keyboard in an examination room, recording patient's complaints, their own observations and ACTIONS TAKEN. The words on his/her screen become a part of the permanent record, documenting diagnosis, procedures and medications prescribed. Here is where the "DO no harm" comes in. Any mis-diagnosis, unproven medication or faulty procedure is permanently recorded in the patient's file available for employee evaluation or legal action. Is there any wonder that doctors are sometimes slow to diagnose?

There's more

ronn in reply to ronn

I forgot to mention, while discussing the "First do no harm" directive, that it seems to have been ingrained in at least some doctors' thinking. I was discussing a procedure with my GP and I gave my rationale for declining it. She agreed, then finished her response with a muttered, "Do no harm". And, finally, have you noticed that most doctors now sit at a computer keyboard working on a screen which you can't see. I was highly impressed with my neuro's knowledge of a new prescription. He told me of it's history, its uses, possible problems, much good stuff. It was only when I got home I found out that the instructions and other info, printed on the visit record were identical to what he had given me verbally and that he had obviously been reading them off his screen.

silvestrov in reply to Beckey

Here is an article about manganese toxicity and how it relates to Parkinson's:

silvestrov in reply to Beckey

Here is another article about manganism and how it differs from Parkinson's.  I remember reading that manganism patients do not lose their sense of smell and L-dopa has little to no response in manganese toxicity.

Tiger101 in reply to Beckey

Wow Beckey, this sounds like my husband too. We are waiting for the Rytary to start helping it has been almost a month and the movement disorder doc says he's 100% certain it's PD. Now what? Any update on your situation? Thanks

NumbBunny in reply to silvestrov


Hi, I read another blog of yours and you are very knowledgeable re understanding the diseases. I have agreed with you all the way and ask if you could perhaps enlighten me a little more on Sinemet. The reason I ask is, my neurologist wanted to change my medication from Siffrol to Sinemet, but upon reading the side-effects, even though I have purchased the Sinemet decided against it. I was particularly disturbed by the suggestion of the need to have my skin checked out on a regular basis due to taking the med - sounded rather ominous to me, so I have opted out and stayed with the Siffrol which appeared to me to be the better of two evils (for me) as the saying goes.

Thank you :)

silvestrov in reply to NumbBunny

Sorry I missed your question but I am too busy for my own good.

Sinemet combines synthetic levodopa with a decarboxylase inhibitor which decreases the size of the dose by 75% and associated nausea that can accompany levodopa (without carbidopa/decarboxylase inhibitor). There are ptoblems with Sinemet because it the carbidopa component causes both niacin (B3) and pyridoxine (B6) depletion. Also there is a honeymoon period in which it works well and then srarlrts losing its effectiveness....approx after 2 years. Scientists recently concluded why Sinemet stops working is because it causes DNA methylation and methyl donors like betaine hydrochloride, folate (methyltetrahydrofolic acid) and methyl B12, are required to keep it Recently I discovered that quercetin is also a methyl donor as is DHA omega 3. I do not take Sinemet because my father had PD and I watched him being taken off entacapone because of side effects; he was taken off of a dopamine agonist because of side effects and warched his dose of Sinemet increase to 25/250 4 times a day. I watched this over a decade and when I experienced parkinsonism from 2 year herbacide, insecticide, algaside exposure I went the natural route. Fortunarely I was able to reverse the symptoms and am 100% srable and functuonal - rhough I have ro take many vitamins, minerals, herbs and amino acids to remain healthy. Here are some articles:

Why levodopa stops working:

The following HU thread has the above information and more:

The article about quercetin being a methyl donor:



Levodopa, methylmalonic acid, and neuropathy in idiopathic Parkinson disease

Folic acid:

If you do not want to go on Sinemet try HP-200 (brand name Zandopa):

There are other articles but it is a bit late and I have to turn in.

How are your eyes. Can you look up and down properly? If not look into PSP. 

In2Az in reply to Mnd0vrmnky

Thank you.  I am able to look up and down with ease.  But my sight constantly becomes blurry often.  Also, my eyes are quite dry...nuisance to constantly use eye drops.  I read the article about PSP and will talk to the doctor about this possibility.  

Tiger101 in reply to In2Az

Hi, my PWP has the same eye problems. He was diagnosed with PD. Can look up and down with ease. Got new glasses and can't see out of them sigh. Very dry eyes but has had that for years.

How about looking into deficiencies in absorption of nutrients or diet? My partner has made amazing progress with B12 methylcobalamin (high dose) and good omega 3 oil and has had to reduce medication (ropinirole) as he started getting overdose symptoms which disappeared on a lower dose. He doesn't have tremor but is now less stiff, has more facial expression and is more upright. Just as Parkinsons often comes on later in life, so do the effects of some people's bodies being less able to absorb nutrients. B12, for example, undergoes a complicated process of conversion before it can be absorbed and some digestive tracts become unable to do it. Worth looking into what deficiencies could cause tremor, perhaps? Best of luck.

Thank you.  I just checked the B12 methylcobalamin on the internet and learned much about the product.  Before you started taking this did you have a blood panel test to identify the B12 levels?  Is this necessary.

Yes get a blood test as once you start taking supplements or injecting, B12 levels in blood can get quite high and further blood testing will not show up a deficiency. B12 deficiency can manifest in lots of strange neurological symptoms. My Dad is in advanced stage Parkinsons and twice in last couple years has had B12 loading doses but GP won't give top ups as per the guidelines so we give them to him in recent months following our research into this subject. The B12 injections have improved his mobility, sleep, alertness, breathing, eliminated falls and seem to have removed any leg and feet pain and discomfort. We wish he had been diagnosed with B12 deficiency and treated properly much sooner. We wonder whether he would have not deteriorated so fast if this was the case as any irreversible damage is difficult to distinguish from Parkinson's disease progression and dementia. Read up on B12 deficiency. Most GPs don't seem to know how to treat it properly or significance of low B12.


I just read an interesting article today that might be of help.

Go to the section a few paragraphs down entitled:

Movement Disorders Similar to Parkinson's

I think I'm going to also do a "Post" in case someone hasn't read your post. This seems to be a popular subject.

Get a second opinion. There is no definitive test for PD, it is diagnosed by observation of symptoms. If your neurologist told you otherwise then you REALLY need to see someone else. They may still say the same thing. Don't shop for a diagnosis but seeing at least one other doctor is smart.

I suggest looking for a movement disorder specialist..they are much more knowledgeable about Parkinsons and other things that mimic it.

Do a Dat Scan which is a test for loss of dopamine in your brain. It's 100% true!


You sound exactly like me!

I have had every test run, and they come back with "everything looks fine" expecting me to be happy. and I am not because I still have blurry vision, dizziness, off-balance.

I am having one more test run on the 25 of this month, which I hope will give us some answers. It is a 3-hour test administered by a neuro-ophthalmologist.

I have had a really bad lazy eye since I was 8.

I will let you know how this goes!

Keep on keeping on :)

Lovingly , Stargate

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