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Old 09-12-2016, 12:56 PM #1
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Tealiish Tealiish is offline
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Location: Central Florida
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5 yr Member
Tealiish Tealiish is offline
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Join Date: Sep 2016
Location: Central Florida
Posts: 3
5 yr Member
Default New Member Here ~YOPD

Hi everyone,

My name is Jennifer and I am currently living in the Central Florida area.
I have 3 children *my youngest is 15 and my oldest is 22. I just turned 46 and have been married 23 years to a very supportive husband.

My health started a turn for the worse after the birth of my last child in 2001. ~I started having weakness in my legs and dragging of my legs then a slow tremor crept in around 2003 or so. My tremor is right side pro-dominate and eventually led to extreme stiffness in arms and wrists and lower extremities.

After what seemed about 8 years of fighting for a diagnosis. Starting from 2003-2011 *one neurologist after another *exhausting I got a diagnosis in 2011 via DATscan showing my dopamine was indeed low. Every other test came back normal it seems and this was my last straw test before they labeled me *psychogenic. I was 42 years old.

The combination of Carbidopa/Leva (100mg 3x a day) and Amantadine (100 mg 3x a day) that helps so much relax the stiffness and tremors to the point you wouldn't know I had PD. Its pretty much an on/off switch tho. My body tells me when its time to take it. I can tell by the stiffness creeping back into my arms that its time for that 2pm dose or 8pm dose. The 7am dose I just wake up to take and fall back to sleep relaxed. I see a very compassionate and knowledgeable neurologist here in Tampa.

I also see a psychiatrist for any depression issues and currently take 150mg of Venlafaxine *antidepressant and 100mg of Trazodne daily.

I had my left kidney removed when I was 6. It was a birth defect (blocked) and never worked from birth.

My main issue now is fatigue. I can only do short bursts of walking or housework without having to lay down or sit down. I still do go grocery shopping, its difficult and i have to pace myself but i get to rest when everything is home and put away.

My blood work that i had done recently is concerning to me. My one working kidney has been achy in the mornings and I suspect this is where some of my fatigue has been coming from.

I do have a gall bladder that needs to come out but I am not symptomatic so I have been putting it off. It doesn't hurt that bad yet. And i just have a lot of burping and indigestion from time to time.

Should I be concerned with these numbers in my blood work?
Does it point to kidney failure or potential failure?
Could this be where some of the fatigue is coming from?

eGFR (nonAfrAm)
53 mL/min/1.73 m2 (Low)

*its been for months> 60 mL/min/1.73 m2
Date: May 24, 2016 03:36 p.m. EDT

Also:
108 mmol/L (High)
Date: Sep 08, 2016 09:07 a.m. EDT

Alk Phos
122 IU/L (High)

~Just curious what questions should I be focused on asking at my PM
appointment tomorrow?

Thank you soo much for reading this. Any wisdom welcomed. I look forward to getting to know this community and becoming a part of it.
God Bless.
Jennifer
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Old 09-12-2016, 05:57 PM #2
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Jomar Jomar is offline
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Default

Hello,
I can't speak on the testing/numbers.
But some things came to my mind while reading your post.

With the multiple issues, I would seek out experts concerning each one.
Or find a very good primary care that will refer you out to specialists..

Other things to consider - possibly a nutritionist, naturopath or other alternative care options like acupressure and such..
Maybe even body worker/ therapeutic massage to help with stiffness..
Our PD forum mentions bicycling/ or bike machine for a good exercise.
It may have some relationship to the rhythm of pedalling for smother walking.

We have a few forums here that can fit for you, explore the site and also use the search feature to find specific keywords/topics..
http://www.neurotalk.org/
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