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Parkinson's Diagnosis


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#21 Daven

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Posted 19 May 2013 - 08:22 AM

Good morning Kim. Tea Parties are fun. I'm a little surprised that two young teenage girls would partake in a one, so good for them. I have two daughters well beyond the tea party phase at 19 and 17.

I get pins and needles, but I need to have been on my feet for an extended period of time to draw out that particular symptom. Neuropathy is not a clinical diagnosis based on my understanding. It can be proven by undergoing an EMG/NCS (nerve conduction study). These tests are very good at determining what kind and the severity of the damage. I do not like to have them administered anymore because they hurt and I end up in a flare up for several weeks after one. My neuropathy all originates from my lower back. This is where my Pain Management Doctor got real irritated with the other MDS that I was seeing. He was trying to indicate that I had neuropathy from my diabetes based on a clinical diagnosis. I agreed to an EMG/NCS in January because of him. The test proved him wrong and my PM doctor strongly suggested I find another MDS. From what I understand about diabetic neuropathy is that the burning/pins and needles is more dispersed like wearing a glove or sock, whereas my neuropathy is more targeted even though it still covers a large area.

It gets real confusing when you try analyze it in layman's terms.

Have a nice day.

Dave

P.S. I lived in Georgia for a year many many many years ago when I was in the Army at Ft. Gordon.

#22 Optomist

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Posted 19 May 2013 - 11:27 PM

Pardon me all to duplicate and triplicate my posts but such is the agony of my wife and equally painful and also stressful for us to watch her like this. She has so so so so much pain and 90 % at night. The Skelexins, Meloxicams did not work. She is on Lyrica 100mg twice a day and Advil 400 mg 3-4 times day. On a good day she is going going and gone..shopping and all but gets slowed down in 2-3 hrs. Here are the questions:

Dr Okum offcourse replied professionally to this too:


She keep having really bad nights every now 3-4 days. Some nights are actually pretty good (how and why) and she is mobile after some slowness but on some nights she is COMPLETELY IMMOBILE and freezes (now immobile and freezing are same thing?) , to a point where she cannot move her hands or head or leg and need assist with a very very small movement. Complains of back pain at times too. Got her X ray for back but nothing too bad except some degenerative changes. She is 48 now. Questions are:

1- Is this simply Parkinson related? Why are meds not working for almost 4-5 hrs despite being taken every 2 hrs. Rescue dosage, regular dosage, Lyrica, and all. (6 tablets of 50/200 CR , 5-6 tablets of 25/100 rescue dosages regular, 3 requip 4mg , 2 amantadine, 2 Lyrica and 6-8 advil every day with CoQ10, Vid D, B and a multivitamin. She also takes 1 Azilect 1 mg and 1 Lexapro a day too. Anyone near to this kind of dosage?

2- Could this be something else and what could it be? How to go about it. Back results were not too alarming. MRI not done due to movements at times. Once MRI was done under GA, 6-7 yrs ago with not much findings.

3- If this intense immobility in your experience only PD related? (but why few nights, why meds not working for these hrs). Mornings she is all around mostly with 25% of night issue or 10% at times. She is working at home, driving, shopping with little difficulty for 30mins minutes which gets better with rescue dosages but no where as bad as nights.

Thanks Fellas!

Edited by Optomist, 19 May 2013 - 11:27 PM.


#23 KimAgain

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Posted 21 May 2013 - 10:03 AM

Dave,

I managed to dodge a nerve conduction test at the time of my PD diagnosis and I felt lucky because I have heard that they are very painful! At that time, I had the usual basic PD symptoms and I think my Primary Care doc just referred me to the neurologist for the nerve conduction test--knowing that he'd give me the PD diagnosis and I would not actually need the test to get it. As it turned out, that's exactly the way it happened.

The tea I had with my little girls was more of a traditional English tea than a "tea party" per se, so I think it made the girls feel very grown up! What surprised ME, is that they actually sat and watched a five-part series of "Pride & Prejudice" with me--very educational and also, a lot of fun!

Now for my bad news: My precious little Hannah has congestive heart failure. My little girl has defied all odds, she has survived four years since her cancers were removed and the vet said she'd live about three months. She has lived paralyzed half her life--she is twelve and a half years-old. My little dog Hannah has taught me many, many things, among them...
  • It doesn't matter if you cannot walk, so long as you get a bite of pizza.
  • No matter how small you may be--dream big.
  • Not even paralysis can hold back joy.
  • If you cannot get over it--go under, around, or through it.
  • Being gentle and delicate does not also mean being weak.
  • Accept what is, but demand your share of cake.
  • It brings great peace to place total faith in someone bigger than you.
  • Enjoy with great gusto the small pleasures in life.
Diuretics for now but, outside of that, only time will tell.
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#24 Daven

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Posted 21 May 2013 - 12:19 PM

Kim,

If I were you, I would get the nerves checked out. The rewards out weigh the discomfort of the testing. If its found that your nerves are trapped in your back causing some neuropathy, there is lots of conservative treatment options that can be tried. Procrastination in this area can result in permanent damage such as myself. Whenever I see someone hunched over or limping from a back issue, I approach them and try to push them to seek treatment. I wouldn't wish my problems on my worst enemy and just so you know, I could be a lot worse off.

Dave

#25 LarryH0123

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Posted 21 May 2013 - 10:33 PM

Kim,

Thanks for sharing life lessons learned from Hannah. I think the most valuable lesson I've learned from the dogs in my life has been to just enjoy who and what you are. Dogs seem to have a zen like ability to be in the here and now no matter what and enjoy just being a dog. Of course pizza may alter their focus temporarily.

#26 KimAgain

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Posted 22 May 2013 - 10:05 AM

Ok, Dave, I'm thinkin' about it. Hard. Real hard. :)

Larry, I agree, the lovely things about dogs is that they keep faithful company without any judgement at all. And, yes, all bets are off when pizza is nearby!

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.





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