Finding Out About Having Parkinson’s Disease

Posted by chuckv @chuckv, Sep 9 1:30am

In 2008, at an office visit with my Primary Care physician at the Fredericksburg, Virginia, VA Clinic, I asked her why hands shook to the point of spilling a cup full of coffee. She looked at me and issued this statement:

“What you have is called Essential Tremors, a regular occurrence when one ages.” No actual examination was done – she just wrote in my record that I had developed Essential Tremors. Nothing more was done to investigate causes for my hands shaking so badly that I was unable even tighten the screws on a door knob or anything similar that required steady hands.

In late January, while at my civilian Neurologist for a scheduled appointment, I asked him what I could do to slow or stop the tremors in my hands and arms. He immediately turned towards me and performed a complete neurologic exam, from head to toes.

He had me hold both hands straight out in front of my body, palms down. He then requested I do several small movements with my arms & hands and resist his pushing:
1) Extend both arms straight out from my body;
2) Rotate both hands to the right as far as I could; repeated same exercise except turned hands as far left as I could; the doctor attempted to press down on both hands;
3) He had me repeat the exercise except this time, he pushed up;
4) He had me extend both arms straight out to the side and pushed in different directions;
5) I was instructed to sit in the chair and extend my right leg against his pressure pushing my leg down;
6) Same exercise using my left leg;
7) Both legs returned to original sitting positions; he pulled out on my right leg and had me use the muscles around the knee and my thighs to hold it in position
8) Same test using my left leg

He then ordered a brain MRI without contrast. The MRI was read by a Radiologist and then re-read by Dr. Kim (the outside Neurologist). The results:
1) No really significant changed noted between the new MRI and the
Comparison MRI (the MRI used for comparison was dated 02/08/2019).
2) Found:
“Tiny focus of calcification or hemosiderin deposition in the medial aspect of the right substantia nigra of indeterminate etiology or clinical significance, but no other evidence intracranial hemorrhage.”

With a lot more language on the page, these comments were made:
“Stable increased FLAIR signal in the white matter suggesting chronic microvascular ischemic change, without evidence of acute or recent ischemia.”

When provided with this MRI Report, I was told that the views singled out pointed to the Early stages of Parkinson’s

Interested in more discussions like this? Go to the Parkinson's Disease group.

Right. My PD diagnosis was based upon a test called a datScan in which a radioactive isotope is injected several hours before a brain scan by a device called a gamma camera. The isotope bonds to dopamine in the brain and the scan can show any deficit of dopamine on either side of the brain that is characteristic of Parkinson's.

I was told that such tests are usually done at major medical centers and that their interpretation is most specialized and critical to the diagnostic outcome. When I went to a second Neurologist for an opinion, a specialist in movement disorders, he concurred with the diagnosis but explained to me that "essential tremor" is a separate disorder and that I seemed to have both. This was a significant finding in determining my treatment and the medications prescribed.

So, your Parkinson's diagnosis may not mean that you do not have Essential Tremor, although it is possible that your PD was simply undiagnosed earlier. You might want to consult with your Neurologist/team about further testing? TA

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There is also a simple drawing test that your doctor can do, or you might be able to do with the help of a friend. Information about it is available on the Internet.
As a caregiver, I found it helpful to see the results of this simple test.
Best wishes.

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Hello @chuckv and welcome to Mayo Connect. Your post certainly shows the importance of getting a second opinion by a specialist.

Did your doctor suggest any treatments (either medications or physical therapy) for the early stage of PD?

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Hi Teresa, It is difficult in this format to know exactly to whom you were addressing your question, but the movement disorder specialist I went to for a second opinion on my diagnosis did recommend that for the tremor dominant symptoms that I have so far that weaning off the Carbidopa/Levodopa and going back to Primidone would be the most effective treatment. I am now several weeks after making that transition and while I did see a slight initial reduction in the tremor, it really wasn't significant and the increases under stress are still there too.
I have a follow up appointment with him next week and I'll post if I learn anything that might be helpful.

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@tedalmon

Hi Teresa, It is difficult in this format to know exactly to whom you were addressing your question, but the movement disorder specialist I went to for a second opinion on my diagnosis did recommend that for the tremor dominant symptoms that I have so far that weaning off the Carbidopa/Levodopa and going back to Primidone would be the most effective treatment. I am now several weeks after making that transition and while I did see a slight initial reduction in the tremor, it really wasn't significant and the increases under stress are still there too.
I have a follow up appointment with him next week and I'll post if I learn anything that might be helpful.

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I appreciate the comments about your meds and the tremors @tedalmon. I'll be interested to hear how your follow-up appointment goes and if any changes are made to your meds.

You mentioned that it was difficult to know who is being addressed in a post. If you @mention a member by name (as I did in this post to you), that member will get a notification that you have posted to them. If you hit "Reply" under another member's post, they will also get a notification. I hope that helps in understanding the posting process.

In reading through your previous posts, I'm not sure that I know how long ago you were diagnosed with PD? In researching Primidone, I see that it is used for treating tremors, but PD is not mentioned. Do you still have a PD diagnosis?

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@hopeful33250

I appreciate the comments about your meds and the tremors @tedalmon. I'll be interested to hear how your follow-up appointment goes and if any changes are made to your meds.

You mentioned that it was difficult to know who is being addressed in a post. If you @mention a member by name (as I did in this post to you), that member will get a notification that you have posted to them. If you hit "Reply" under another member's post, they will also get a notification. I hope that helps in understanding the posting process.

In reading through your previous posts, I'm not sure that I know how long ago you were diagnosed with PD? In researching Primidone, I see that it is used for treating tremors, but PD is not mentioned. Do you still have a PD diagnosis?

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Teresa, I was diagnosed at Mayo-Jacksonville in June or thereabout, just a few months ago. Since we summer in RI, I made an appointment for a second opinion at The Brown University Movement Disorder program at Butler Hospital to see Joseph Friedman MD, a movement disorder specialist. He confirmed the PD Diagnosis, based upon the datScan, but said that my Essential Tremor diagnosis from years before was still responsible for most of my tremor as they are separate disorders and that it is possible to have both, which he believes I do.

By then, I was already on the Carbidopa/Levodopa which was not effecting the tremor and is associated with various side effects in long term use. He told me to down-titrate off the Levodopa and to then start a regimen of Primidone. So far the Primidone did seem to reduce the tremor at first but the effect seemed to fade rather quickly. I have a follow-up visit to assess/adjust the dosage next week.

I did notify my neurologist at Mayo, Dr. Pena of this and she concurred with the new diagnosis of PD and ET and agreed to the change in the meds. I believe I may still be a candidate for DBS and will explore that option to control the tremor when I get back to Florida. TA

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@tedalmon

Teresa, I was diagnosed at Mayo-Jacksonville in June or thereabout, just a few months ago. Since we summer in RI, I made an appointment for a second opinion at The Brown University Movement Disorder program at Butler Hospital to see Joseph Friedman MD, a movement disorder specialist. He confirmed the PD Diagnosis, based upon the datScan, but said that my Essential Tremor diagnosis from years before was still responsible for most of my tremor as they are separate disorders and that it is possible to have both, which he believes I do.

By then, I was already on the Carbidopa/Levodopa which was not effecting the tremor and is associated with various side effects in long term use. He told me to down-titrate off the Levodopa and to then start a regimen of Primidone. So far the Primidone did seem to reduce the tremor at first but the effect seemed to fade rather quickly. I have a follow-up visit to assess/adjust the dosage next week.

I did notify my neurologist at Mayo, Dr. Pena of this and she concurred with the new diagnosis of PD and ET and agreed to the change in the meds. I believe I may still be a candidate for DBS and will explore that option to control the tremor when I get back to Florida. TA

Jump to this post

If you are considering DBS, @tedalmon, Connect member, @tuyetnga, might be able to provide you with some information as he has just completed the first phase of DBS.

Have either of your neurologists discussed DBS with you?

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