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Needing support and opinions from those who know.


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#21 Kristakj78

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Posted 18 December 2012 - 09:10 PM

So, how did it go today?

#22 Sullysgirl

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Posted 19 December 2012 - 10:32 AM

Sorry for not updating last night, appointment ran long then had to jet off to a choir concert for my daughter. Well the verdict is essential tremors, and I am apparently too young for the neurologist to feel comfortable prescribing an anti tremor med. So I guess I am stuck feeling as frustrated and inconvienced as before. She has no idea what is causing my headaches, her guess is stress and told me to take vitamins. She says she sees no symptoms of PD and seemed unconcerned with the strong family history of it. So I guess I am just here in the same spot as I was a week ago...just me and my tremors.

#23 christie

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Posted 19 December 2012 - 04:01 PM

Susie,
You are NOT in the same spot...now you have a diagnosis. and a rather "benign" diagnosis, with a good prognosis, far better than the diagnosis of a degenerative condition such as PD. PD is a horrible disease. you should be relieved you (seem) to have got off the hook ! i would LOVE to be in your place.

On the other hand, i don't quite understand why your neurologist feels that your essential tremor must not be treated. (at this point).
English is not my first language !

#24 CynthiaM

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Posted 19 December 2012 - 10:23 PM

Hate to say this but my first diagnosis was Essential Tremor and I was given a med for it that did help the tremors about half the time. It helped the "action tremors" like when I tried to write or put on makeup etc. It didn't help the "resting tremors". A followup visit had me taken off of the first med and put on Mirapex. I was diagnosed as PD with the possibility of Essential Tremor too. I've still not been put back on the med for action tremors, which I'm going to see if I can't get that med back too because the action tremors make it hard to perform so many everyday tasks. My PD is managed quite well with Sinemet now.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#25 christie

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Posted 20 December 2012 - 03:49 AM

PD and essential tremor may coexist. And, yes, sometimes neuros (as any other doctor) make the wrong diagnosis. Some patients are diagnosed with PD they don't actually have, while others are diagnosed with dystonia, essential tremor, depression, etc, while they actually have PD. But this is far from the rule.

On the other hand, as emphasized by one of the top movement disorder specialists William Weiner : "Quite honestly, we expect medical students to be able differentiate between essential tremor and parkinsonism". in the absence of true rigidity and bradykinesia, a diagnosis of PD is highly unlikely, if not impossible. And most neurologists are competent enough to tell the difference between ET and PD.

From my point of view, Susie went to the neurologist (we can only assume she was an experienced MDS), the neuro examined her, listened to her and explained her findings to her, including why she thinks PD is out of the picture. That is GOOD news, no, correction, that is GREAT news,leaving little margin of error.

My opinion : people with a tremor or any other neurological symptom resembling Parkinson's,but without a formal diagnosis of PD, should not read too much into anything written in this forum. (present post included, LOL :cool: ). Our opinion/advice, albeit well intended, will always lean towards PD. Nothing worse than projecting our own diagnosis/fear of PD to other people.

Edited by christie, 20 December 2012 - 03:50 AM.

English is not my first language !

#26 Hokie

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Posted 20 December 2012 - 08:50 AM

Well said Christie. We have all had different experiences in getting to a dx. Be thankful and happy for Sullygirl that it was dx as ET. We should all be happy for her and hope she find relief in treatment.

#27 CynthiaM

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Posted 21 December 2012 - 02:12 AM

Reading Susie's post it doesn't sound like her visit to the Neuro was very successful at all. She feels like she is in the same spot as she was before the visit. ET might sound benign when compared to PD but it can make every day tasks difficult if not impossible to do. My brother started meds long before I did for ET. He was actually the one that got me to go to the doctor after he saw me struggling with the action tremors. He is 47 now and has been on the meds for as long as I can remember. Action tremors bother me much more than the resting ones. If she doesn't feel confident or satisfied with the treatment or non treatment, maybe a second opinion should be sought. How many people with YOPD would still be without a Dx if they didn't keep going back to the doctor and/or seeking a second opinion? For me it was more specialists, needle pricks and tests than I can count, 2 MRI's, 2 Neurologists and 10 years to what I finally feel is the correct diagnosis since the Sinemet works.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#28 christie

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Posted 21 December 2012 - 04:33 AM

The good news is that susie was not diagnosed with YOPD. NOT that she was diagnosed with ET, which is as annoying as any disease can be. In my previous post i said i don't agree with her neurologist's choice to NOT prescribe something to help with her tremors. A second opinion wouldn't hurt, but sometimes only time can tell what the correct diagnosis is.many patients say that it was neuro number 5, 6, 7 or 10 that finally diagnosed them correctly with PD, but-most likely, at least in some of these cases-it was time alone that made the correct diagnosis. I don't think that ANY patient with YOPD can remain undiagnosed for long, or at least NOT LONG until symptoms start to REALLY interfere with quality of life simply because the progression of this disease is relentless, and no patient-or neuro for that matter- can escape from it's truth. When it comes to PD, you can run, but you cannot hide !

Edited by christie, 21 December 2012 - 04:34 AM.

English is not my first language !

#29 Kristakj78

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Posted 21 December 2012 - 06:41 PM

"When it comes to PD, you can run, but you cannot hide."

Christie,

VERY well said. Just as the true colors of people come out, same as PD.

I would seek a 2nd opinion though. For any disease, and just for peace of mind, it's a good idea to seek a 2nd opinion, esp if you're not comfortable with the first.

I had genetic counseling the other day...learned a LOT regarding YOPD and genetics, as opposed to getting PD as an older individual. Interesting.




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