Parkinson's Disease Tulip


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Old 03-17-2014, 07:33 PM #1
TrudiN TrudiN is offline
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Default PD diagnosis, but a lot of weird symptoms

I'm 48 years old, and I've had PD-like symptoms for 3-4 years now, with PD diagnosed a year ago by DaTscan. However, I have many symptoms that seem very odd and not likely to be part of PD, in my neurologist's opinion. So I thought I would "ask around", so to speak, to see if others have had similar symptoms, and whether they were told these were PD-related. I've never been in a car accident, never had any injury or head trauma, no concussion. All MRIs are normal.

My only two symptoms that are "classic" PD are:
- Loss of sense of smell 8-10 years ago
- Loss of left arm swing 3 years ago

The questionable symptoms are the following:
- Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest some of the time and action when holding papers or holding my hands/arms out in from of me - e.g. while talking
- Left leg drags/scuffs when I run or walk and doesn't come forward as it should, with left knee hyperextending for no good reason
- Left toes wanting to cramp when I walk or run (haven't cramped yet, but they definitely would like to one day)
- Cervical dystonia, causing voice problems - helped somewhat by periodic Botox injections
- Orofacial dystonia, with left side of face hardly moving (masking??) but right side of face grimacing significantly whenever I talk - some people see this and think I've had a stroke, which I have not - results in asymmetric smile/face
- Tourette's/tic disorder since I was about 13 years old (Tourette's = too much dopamine; PD = not enough dopamine - go figure that I could now have both at the same time...)
- Eyes close when they shouldn't at times, remaining closed for several seconds before I can open them again - helped by periodic Botox injections
- Upgoing big toe (not sure if this is a positive Babinski?)
- Slightly decreased palate elevation
- Hyperreflexia, especially on left
- Clonus in left foot/ankle, recently diagnosed - apparently ties in with the hyperreflexia as spasticity
- Rapid bowel transit, resulting in weight loss without trying - started about 2-3 years ago

That's a long list, I know - I just wanted to see if anyone saw any clues in any of this or similarities to their own issues. I do have two MDS neurologists I see, so I'm not trying to play too much doctor on my own, but they're actually as perplexed as I am.

Thanks for any thoughts.
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Old 03-18-2014, 03:54 AM #2
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dilmar dilmar is offline
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Hello TrudiN

I looked for these symptoms at the European Parkinsons Disease site and here are some links so you can decide whether your symptoms are described here. I have connected symptoms to what I think are relevant pages.

TREMOR
Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest some of the time and action when holding papers or holding my hands Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest /arms out in from of me - e.g. while talking

http://www.epda.eu.com/en/parkinsons...or-parkinsons/

Quote: About 70% of people with Parkinson’s have tremor when first diagnosed, with rest tremor and action tremor being equally common.


DYSTONIA / CRAMPS
Left toes wanting to cramp when I walk or run (haven't cramped yet, but they definitely would like to one day
Cervical dystonia, causing voice problems - helped somewhat by periodic Botox injections
Orofacial dystonia, with left side of face hardly moving (masking??) but right side of face grimacing significantly whenever I talk - some people see this and think I've had a stroke, which I have not - results in asymmetric smile/face
Eyes close when they shouldn't at times, remaining closed for several seconds before I can open them again - helped by periodic Botox injections
Upgoing big toe (not sure if this is a positive Babinski?)
Clonus in left foot/ankle, recently diagnosed - apparently ties in with the hyperreflexia as spasticity

http://www.epda.eu.com/en/parkinsons...toms/dystonia/


BOWELS
As to your Rapid bowel transit, resulting in weight loss without trying - I dont know how your rapid transit time was tested but I do know that many people experience sphincter control problems and urgency sometimes just bladder and others both bladder and bowel.

http://www.epda.eu.com/en/research-p...relatdisord-3/

I do recognize many of these symptoms in myself or others.
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Old 03-18-2014, 10:55 AM #3
anagirl anagirl is offline
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I don't have time at the moment for a long post - but just wanted to let you know that I have many of these symptoms as well. I too had a positive DaT scan and a PD diagnosis. I'm 44 years old and was diagnosed at 38.


Quote:
Originally Posted by TrudiN View Post
I'm 48 years old, and I've had PD-like symptoms for 3-4 years now, with PD diagnosed a year ago by DaTscan. However, I have many symptoms that seem very odd and not likely to be part of PD, in my neurologist's opinion. So I thought I would "ask around", so to speak, to see if others have had similar symptoms, and whether they were told these were PD-related. I've never been in a car accident, never had any injury or head trauma, no concussion. All MRIs are normal.

My only two symptoms that are "classic" PD are:
- Loss of sense of smell 8-10 years ago
- Loss of left arm swing 3 years ago

The questionable symptoms are the following:
- Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest some of the time and action when holding papers or holding my hands/arms out in from of me - e.g. while talking
- Left leg drags/scuffs when I run or walk and doesn't come forward as it should, with left knee hyperextending for no good reason
- Left toes wanting to cramp when I walk or run (haven't cramped yet, but they definitely would like to one day)
- Cervical dystonia, causing voice problems - helped somewhat by periodic Botox injections
- Orofacial dystonia, with left side of face hardly moving (masking??) but right side of face grimacing significantly whenever I talk - some people see this and think I've had a stroke, which I have not - results in asymmetric smile/face
- Tourette's/tic disorder since I was about 13 years old (Tourette's = too much dopamine; PD = not enough dopamine - go figure that I could now have both at the same time...)
- Eyes close when they shouldn't at times, remaining closed for several seconds before I can open them again - helped by periodic Botox injections
- Upgoing big toe (not sure if this is a positive Babinski?)
- Slightly decreased palate elevation
- Hyperreflexia, especially on left
- Clonus in left foot/ankle, recently diagnosed - apparently ties in with the hyperreflexia as spasticity
- Rapid bowel transit, resulting in weight loss without trying - started about 2-3 years ago

That's a long list, I know - I just wanted to see if anyone saw any clues in any of this or similarities to their own issues. I do have two MDS neurologists I see, so I'm not trying to play too much doctor on my own, but they're actually as perplexed as I am.

Thanks for any thoughts.
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