Diagnosed with Atypical Parkinson's? What does this really mean?

Posted by larry68 @larry68, 9 hours ago

I have been diagnosed as having Atypical Parkinsons.Is that something that goes away for a month or so and then comes back for a month or so or do i need to find a different Neurologist?

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Hi @larry68

This is an interesting question. You might want to check with your provider as to what "Atypical Parkinson's" actually means.

Do your symptoms change from day to day? Do Parkinson's meds (like Carbidopa/Leodopa) help with your symptoms? How is your gait and balance?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hi @larry68

This is an interesting question. You might want to check with your provider as to what "Atypical Parkinson's" actually means.

Do your symptoms change from day to day? Do Parkinson's meds (like Carbidopa/Leodopa) help with your symptoms? How is your gait and balance?

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@hopeful33250 my gait and balance is off all the time but my stuttering comes and goes.My head doesn't hurt all the time but involuntary jerks are all the time.

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Profile picture for larry68 @larry68

@hopeful33250 my gait and balance is off all the time but my stuttering comes and goes.My head doesn't hurt all the time but involuntary jerks are all the time.

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@larry68 have you seen a movement disorder specialist ? this is different than just a neurologist. They have specific evaluations they conduct. They are neurologists but specialize in movement disorders such as Parkinson's. I had a regular neurologist I was seeing and he misdiagnosed me. he also could not answer all my questions about Parkinson's. So, on advice from others I found a movement disorder specialist

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Profile picture for emmit @emmit

@larry68 have you seen a movement disorder specialist ? this is different than just a neurologist. They have specific evaluations they conduct. They are neurologists but specialize in movement disorders such as Parkinson's. I had a regular neurologist I was seeing and he misdiagnosed me. he also could not answer all my questions about Parkinson's. So, on advice from others I found a movement disorder specialist

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@emmit Thanks,i am gonna do that.!st neurologist i had told me there was nothing wrong 5 minutes after i passed totally out in the waiting room and i couldn't talk to him because i was stuttering so bad

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Hi, @larry68 - so sorry to hear about the passing out and stuttering you experienced in the waiting room.

Glad to see you've connected with @hopeful33250 and @emmit about your diagnosis of atypical Parkinson's.

You may notice that I started a new discussion with your post because I thought this topic of atypical Parkinson's merited it and that others might have similar questions.

Fellow members such as @bmfoster @larryh123 @eojeda1 @patriciajean may have insights to share about atypical Parkinson's and what that means to a person's life and health.

Will you be undergoing therapy of some kind for the gait and balance issues you mentioned, larry68?

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Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @larry68 - so sorry to hear about the passing out and stuttering you experienced in the waiting room.

Glad to see you've connected with @hopeful33250 and @emmit about your diagnosis of atypical Parkinson's.

You may notice that I started a new discussion with your post because I thought this topic of atypical Parkinson's merited it and that others might have similar questions.

Fellow members such as @bmfoster @larryh123 @eojeda1 @patriciajean may have insights to share about atypical Parkinson's and what that means to a person's life and health.

Will you be undergoing therapy of some kind for the gait and balance issues you mentioned, larry68?

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@lisalucier I go back to neurologist on 30th of this month and find out what they are gonna do.They don't know i read their comments on Follow My Health yet.I will be asking questions then.I can barely type with my hands shaking so bad.

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I wholeheartedly agree that a Neurologist who specializes in Movement Disorders is needed to help sort out your symptoms. I too have experienced near passing out spells - of which there can be many causes, but in patients with neurodegenerative disease (Parkinson's, Multiple Systems Atrophy, etc.) can be related to orthostatic hypotension. Orthostatic hypotension is caused by failure of the Autonomic Nervous System - a problem often associated with Parkinson's and Multiple Systems Atrophy. Basically the "automatic" body systems that keep blood flowing to your brain when you stand up are insufficient to maintain sufficient blood flow and down you go. It's exacerbated by hot temperatures, exertion and dehydration. There are other symptoms associated with the ANSF like constipation, urinary urgency or incontinence, loss of sense of smell, etc. People have the symptoms for years without putting the puzzle pieces together - then all of a sudden it makes sense to a physician or you do some investigation of your own and it becomes clearer. Another big symptom is REM sleep behavior disorder - acting out your dreams at night. Over 70% of patients with REM sleep behavior disorder go on to develop a neurogenerative disorder. Atypical Parkinson's generally refers to Multiple System Atrophy with either Parkinson's features or Cerebellar features and does not respond to the typical Parkinson's meds. They are all challenging diagnoses to make -even for neurologists, but a Movement Disorder specialist is your best bet for an accurate one. Many of my symptoms had been present for over 10 years before I was finally diagnosed with Parkinsons Disease with ANSF by a Movement Disorder Neurologist. Good luck to you.

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