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Somewhat Diagnosed


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#1 eddie sky

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Posted 05 September 2013 - 12:02 PM

I have been seeing a number of different neurologists to determine what is going on with me. The first diagnosis was fibromyalgia, then essential tremors, and the recent doctor said Parkinson's disease. At times I agree with the Parkinson's diagnosis, at other times I don't know and think my mind is playing tricks on me.

The thing I find frustrating at this point is the books I read are in contradiction to my experience. For example, my left fingers and arm shake at times, my toes curl, however the tremor on my right foot seems more consistent. The book says this should be happening on my left leg/foot. Also, the books say that head tremors don't occur with Parkinson's yet Mr. Fox appears to have head bobbing issues.

Also, I find it frustrating that I cannot find good data on what to expect from the progression especially from a cognitive perspective. I have small children I need to plan for, as well as a job which requires a good deal of cognitive ability.


Also, I don't know what my rights are in relation to my insurance company, federal benefit (if I should become disabled), and health insurance.

Finally, I wonder about what I can expect from a psychological change. How much is caused by the drugs and how much is Parkinson's related.

I don't really care about my well being at this point, just worried about my family, I am too young (44)

Any insights you could give would be appreciated.

Edited by eddie sky, 05 September 2013 - 12:04 PM.


#2 metfan31

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Posted 05 September 2013 - 12:53 PM

Eddie I hear you loud and clear when it comes to family. I am 33 and have 3 small boys. I too have been 'somewhat diagnosed(Dx)'

In the past months since I first had a Neurologist say Parkinson's Disease (PD) to me I have done a ton of reading about People With Parkinsons (PWP) trying to determine what my Dx would be. I have found two consistent truths in PD:
A ) PD is one of these hardest things to diagnose
B ) no 2 PWP are alike in symtoms and how they progress

That said, having different issues on either side of your body would not be consistent with regular PD.
M.J. Fox's regular movements including mentioned head bob have been documented as more of a side effect to his medication. He admits himself to over dueing the meds because the oposite (no movement and trouble talking clearly) makes it too difficult for him to appear on TV. Also note that he is not in the early stages of PD anymore.

From what I have learned if you have PD, with proper doses of medication you can have around 10 more years of functioning at your current level, and probably longer before becoming officially disabled. I myself am terrified with the idea of my mind losing any more function than it already has in the past year, and the idea of losing fine motor skill scares me as much. I have taken to writing things down a lot and showing/teaching my wife & kids as many things as I can before I lose the ability to do these tasks. Whether or not you have PD you are not alone, take things one day at a time.

Richard

Edited by metfan31, 05 September 2013 - 12:54 PM.


#3 eddie sky

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Posted 05 September 2013 - 02:19 PM

Thanks for your response metfan. Have you had any luck finding information regarding your rights?

What type of symptoms are you experiencing?

Thanks.

#4 metfan31

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Posted 05 September 2013 - 03:53 PM

Hi Eddie, which insurance rights are you referring to? Diasbility or health insurance? Basically you Dx should not impact your employment status so long as you can perform your job, and if you have long term disability coverage, the day your illness prevents you from working you can claim disabilty. I am not sure if that answers your question.

My symptoms started as depression, insomnia and trouble focusing. About a month or two later I was waking up with night sweets, and I had a tremor in my right hand and right foot when I am not using them. I have had joint stiffness and pain in my right leg and arm for over a year now, and that got worse (in the evenings esp) a month or two after my tremor started. The depression led me to start drinking almost nightly, which eased my symptoms while drunk, but the days after my symptoms would intensify. Lately I have had bad short term memory, so I may have forgot some symptoms. Ask for a DAtScan or to try Carbidopa Levodopa to determine PD.




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