Parkinson’s Disease Misdiagnosis

Posted by paulbkk1979 @paulbkk1979, May 8 7:31am

I am 74 years old and I was diagnosed with Parkinson’s disease in 2019 at the age of 69 years old and I still do not have any symptoms of the disease, no constipation, tremors, pain, I do feel dizzy often and fatigued and blurred vision at times but I am sure that the blurred vision is not due to a disease like Parkinson’s disease. I have no tremors at all, I do not have any problems with my bowel movements.
My neurologist said it could be a disease that is similar to Parkinson’s disease. What could that disease possibly be to mimic the symptoms of Parkinson’s disease? I think he was lying to me about the diagnosis and the disease. Or else he made a mistake in his diagnosis and he sounded like he was trying to come up with something that sounded logical, which it didn’t make sense to me.

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Hello @paulbkk1979 and welcome to the Parkinson’s (PD) support group on Mayo Connect. I’m glad that you posted your concerns. Believe it or not, your concerns are not all that unusual. Neurological symptoms are hard to diagnose as there are many neurological disorders that carry similar symptoms. Also, not all people with PD have the same symptoms. I was diagnosed with PD about 16 years ago, after having symptoms of balance, gait problems, foot dragging, and falling for over 10 years prior to the diagnosis. I’ve also never had any tremors.

Based on the symptoms that I mentioned in the paragraph above, I had numerous neurological tests (MRI, EMG) to rule out other disorders. Have you also had these tests?

Because there seemed to be no other reason for my symptoms, my neurologist gave me a script for Sinemet. I was to titrate the dose over several weeks. The first week I took one-half tablet every day. The second week two half-tablets every day. During this time, I realized that my symptoms were lessened, and I was walking better, and my balance was much improved.

Have you taken any PD meds like Sinemet? If so, were they at all helpful in reducing your symptoms. As you mentioned dizziness, I’m wondering if you have had any vestibular therapy. This type of physical therapy can be very helpful in dealing with balance and/or dizziness problems.

I doubt very much that your neurologist was lying to you. However, please know that it is always your right to seek a second opinion. Will you post again and let me know how you are doing?

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Basing a Parkinson’s diagnosis on blurry vision and dizziness is medical malpractice! Are you sure you had a neurologist? The MOST IMPORTANT type of doctor to see is a MOVEMENT DISORDER SPECIALIST. Yes, Parkinson’s can cause eye problems (I had double vision two years before I was diagnosed.). Tremor is absent in a minor number of people . It is not necessary for a diagnosis. Parkinson’s can cause a whole host of seemingly unrelated problems…..e.g. lack of arm swing, constipation, foot dragging-tripping, tremor on one side, sebborheic dermatitis, anxiety and depression, maybe a fall or two, and on and on and on. My family doctor finally sent me to get a DATSCAN. It clearly showed evidence of dopamine loss on one side of the sustantia nigra . This , however, can only rule out essential tremor. It could be a “Parkinsonian” type of problem..e.g. Parkinson’s, Multiple System Atrophy, or Progressive Supranuclear Palsy. Get a better doctor, get referred to a Movement Disorder Specialist, and get back to this site. Good luck!

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Far too many health issues arise from living in a lifestyle that is conducive to illnesses. Have first what helps with general health: proper food, adequate physical and mental stimulation, manage life stresses with thoughts and emotions that are sensible, and have interesting stimulating friendships. Yes, social connections seems to be good to stave off PD! I came across this in WSJ article recently by JAMA Neurology.
Actually I believe friendships are a panacea for a whole lot of our problems whether physical or mental.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10546293/
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@hopeful33250

Hello @paulbkk1979 and welcome to the Parkinson’s (PD) support group on Mayo Connect. I’m glad that you posted your concerns. Believe it or not, your concerns are not all that unusual. Neurological symptoms are hard to diagnose as there are many neurological disorders that carry similar symptoms. Also, not all people with PD have the same symptoms. I was diagnosed with PD about 16 years ago, after having symptoms of balance, gait problems, foot dragging, and falling for over 10 years prior to the diagnosis. I’ve also never had any tremors.

Based on the symptoms that I mentioned in the paragraph above, I had numerous neurological tests (MRI, EMG) to rule out other disorders. Have you also had these tests?

Because there seemed to be no other reason for my symptoms, my neurologist gave me a script for Sinemet. I was to titrate the dose over several weeks. The first week I took one-half tablet every day. The second week two half-tablets every day. During this time, I realized that my symptoms were lessened, and I was walking better, and my balance was much improved.

Have you taken any PD meds like Sinemet? If so, were they at all helpful in reducing your symptoms. As you mentioned dizziness, I’m wondering if you have had any vestibular therapy. This type of physical therapy can be very helpful in dealing with balance and/or dizziness problems.

I doubt very much that your neurologist was lying to you. However, please know that it is always your right to seek a second opinion. Will you post again and let me know how you are doing?

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Hi Teresa thank you for your reply and yes I have taken medication for the disease, carbidopa levodopa and it did not alleviate my symptoms of occasional dizziness, blurred vision, or frequent urination. My neurologist did say that it might be an illness that is similar to Parkinson’s disease, but he has not done any tests to determine whether it is related to the disease. I have had brain MRI’s done twice and I have no abnormalities showing on the scans of the brain. I am seeing my neurologist again in June, do you have any recommendations for any questions that I should ask him?
I read that constipation is one of the most ubiquitous symptoms of Parkinson’s disease is that accurate or not? I have absolutely no problem with constipation thankfully. I hope you are doing well Teresa and having a wonderful Mother’s Day weekend.
Paul

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@doorman

Basing a Parkinson’s diagnosis on blurry vision and dizziness is medical malpractice! Are you sure you had a neurologist? The MOST IMPORTANT type of doctor to see is a MOVEMENT DISORDER SPECIALIST. Yes, Parkinson’s can cause eye problems (I had double vision two years before I was diagnosed.). Tremor is absent in a minor number of people . It is not necessary for a diagnosis. Parkinson’s can cause a whole host of seemingly unrelated problems…..e.g. lack of arm swing, constipation, foot dragging-tripping, tremor on one side, sebborheic dermatitis, anxiety and depression, maybe a fall or two, and on and on and on. My family doctor finally sent me to get a DATSCAN. It clearly showed evidence of dopamine loss on one side of the sustantia nigra . This , however, can only rule out essential tremor. It could be a “Parkinsonian” type of problem..e.g. Parkinson’s, Multiple System Atrophy, or Progressive Supranuclear Palsy. Get a better doctor, get referred to a Movement Disorder Specialist, and get back to this site. Good luck!

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Hello Doorman thanks for responding to my message. I do not have any movement issues like walking, gait, arm swing, strength, etc. Blurred vision and spells of dizziness. I don’t have any issues of dragging my feet, or tripping but I do have a problem sometimes judging the unevenness of a sidewalk or walkway, I do not think that it is due to Parkinson’s disease. It is more of a vision problem Doorman. I do not have any motor symptoms of Parkinson’s at all Doorman and I was diagnosed four years ago with the disease.
Thanks for your help and your advice.
Paul

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It does NOT sound like Parkinson’s. Good luck.

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@paulbkk1979

Hi Teresa thank you for your reply and yes I have taken medication for the disease, carbidopa levodopa and it did not alleviate my symptoms of occasional dizziness, blurred vision, or frequent urination. My neurologist did say that it might be an illness that is similar to Parkinson’s disease, but he has not done any tests to determine whether it is related to the disease. I have had brain MRI’s done twice and I have no abnormalities showing on the scans of the brain. I am seeing my neurologist again in June, do you have any recommendations for any questions that I should ask him?
I read that constipation is one of the most ubiquitous symptoms of Parkinson’s disease is that accurate or not? I have absolutely no problem with constipation thankfully. I hope you are doing well Teresa and having a wonderful Mother’s Day weekend.
Paul

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@paulbkk1979 Hello Paul,

Thanks for your post and the additional information you provided about the diagnostic tests and medications that have been tried. While constipation is a common symptom associated with PD it is probably best not to look at just one symptom to either diagnose or rule out PD.

As you report blurred vision and dizziness, I'm wondering if you have been examined by neurological ophthalmologist. If not, a referral might be a good option.

Have you ever had balance testing? If not, you might inquire about this as well. There are different types of neurological disorders that are related to vision and balance problems. If there is an issue with vision and balance, vestibular therapy could be very helpful to you.

I also wondering whether your current doctor is a movement disorder specialist. These are neurologists with special training in movement disorders like PD. If not, you might consider asking for a referral to one of these doctors.

As a second opinion might be quite helpful at this time, I'm wondering if you live near a multi-disciplinary medical center? I'm thinking about a health care facility like Mayo Clinic (appointment information for any of Mayo's three campuses can be found here, http://mayocl.in/1mtmR63), or a university medical school or a Parkinson's Center of Excellence. These might be places where you can get a thorough work-up by different specialists to treat this complex of symptoms.

I hope that some of these ideas might help you formulate a list of questions for your doctor at your next appointment. I look forward to hearing from you again. Will you post any other questions or concerns?

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@doorman

It does NOT sound like Parkinson’s. Good luck.

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Yes I agree it does not sound like Parkinson’s disease. I am thinking of getting a second opinion from another neurologist or movement specialist and an opthamologist.
My neurologist Dr. Iqbal said it might be a disease that is like Parkinsons.

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@paulbkk1979

Yes I agree it does not sound like Parkinson’s disease. I am thinking of getting a second opinion from another neurologist or movement specialist and an opthamologist.
My neurologist Dr. Iqbal said it might be a disease that is like Parkinsons.

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Hello @paulbkk1979

Here are some links and other ideas to consider:
--Single-photon emission computerized tomography (SPECT) scan called a dopamine transporter (DAT) scan
https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062

--Dizziness/Balance Problems

https://www.mayoclinic.org/diseases-conditions/balance-problems/symptoms-causes/syc-20350474
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