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26 year old with questions!


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#21 xaxa

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Posted 13 January 2013 - 08:48 AM

Bren: Two weeks trial of Sinemet IS NOT ENOUGH!! Y

#22 xaxa

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Posted 13 January 2013 - 08:49 AM

Bren: Two weeks trial of Sinemet IS NOT ENOUGH!! You need to give it at least 4 to 6 weeks and titrate up slowly. Please try it again!

#23 xaxa

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Posted 13 January 2013 - 08:53 AM

Note: while I'd rather not have Parkinson's, I have MUCH more of a life on meds than I did off. So having something "treatable" was, in my case, better than not knowing. Just sayin.... ;)

#24 christie

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Posted 13 January 2013 - 07:33 PM

who wants a diagnosis when he can have a LIFE ?


i didn't mean a life without drugs, a life with untreated symptoms. regardless of the diagnosis, any symptom affecting our quality of life should be addressed and appropriately treated.

we are all different of course, but what I would like to hear from my neuro would be something like:
"your brain MRI was negative, meaning you don't have a brain tumor, your EMG was negative, meaning you don't have ALS, your blood work was unremarkable. Your datscan was negative as well, meaning you probably don't have denegerative parkinsonism. we can't be absolutely certain at this point about the cause of your symptoms. it might be some form of dystonia, or even something temporary-some times even stress can cause parkinson's like symptoms- so we are gonna try some meds and see if something helps with your symptoms. in the meantime you should also try to reduce stress and exercise as much as you can. but you can relax now, because whatever this is it doesn't seem to be something serious".

then i woke up of course and heard my neuro say: "i'm sorry to tell you that, but i'm certain now that you have parkinson's disease. your progression is faster than i hoped. you should expect about 7-8 "good" years. you won't die of Parkinson's but you will live with this all your life, so you'd better start getting used to it"

so, that's what i would prefer to any diagnosis: a LIFE without a life-threatening or a degenerative disease.
English is not my first language !

#25 Bren128

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Posted 13 January 2013 - 10:10 PM

Bren Dear,

Would that I could take your fears and worries away, soothe your anxieties, ease your troubled mind... but, there are no words I can offer that will calm the rough waters your emotional ship is bobbing around in right now. I cannot even tell you that I know how you feel, for truly, do any of us ever really know how someone else feels? All I can offer is this...

Some of life's trials are pea-sized--tiny little things we consume easily and without much fanfare. Then, there are the big, big things--things we have no taste for and yet are forced to face and consume anyway. These are the life changing issues, the elephant-sized problems that are served up to us whether we have an appetite for them or not. The question is, how does one eat an elephant?

The answer: One bite at a time.

I know it's hard, but try not to focus on the whole elephant, just the bite you are working on right now. Is this denial? Sure. But, one way or another, you have an elephant to eat, so why choke yourself trying to consume it in one go? Facing the whole elephant at once is not only overwhelming, it can be downright terrifying and altogether too much to face. So take a deep, deep breath and focus your full attention on chewing over the mouthful you have to eat right now.

I'm so, so sorry I have nothing better to give, nothing more helpful to offer, but I feel very confident that if you keep on sharing with the good people on this forum, you'll find a way to eat the elephant you face.

Best regards,
Kim


Your words are wise and calming, but sometimes we must face the elephant head on. If only to learn that we should not! I am learning! :)

#26 Bren128

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Posted 13 January 2013 - 10:18 PM

I like your advice Kim...very interesting (and applicable) analogy!

Sometimes, getting an actual diagnosis is a relief compared to the ongoing evaluation and limbo of the unknown. At least then there is a name to put with the changes taking place in the body. Then you can begin the "now what?" stage and begin to develop a practical strategy for treatment and continuing on with life.

I'm sure you are emotionally exhausted...lean on and use the supports you have...family, friends, your girlfriend, this forum, your faith, etc... You will get through this with the support of those that love and care about you.

We care and we are here...keep encouraged, friend!

Hugs,

Michael


Yes! I can deal with whatever I have, I just want to know what it is I have! Fighting a battle against the unknown for 9 months is exhausting. I may have not taken the sine met long enough, but it didnt help me in the slightest in the 2 weeks I took it. The Artane helps within a half hour. I started the Amantadine today, going to wait a week and try the nuero patch. Thank you all for the support. This forum is my ''land of understanding'' nobody outside of here has any idea whats happening to me including my doctors who admit it to my face. God knows though :)

#27 Bren128

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Posted 13 January 2013 - 10:21 PM

i didn't mean a life without drugs, a life with untreated symptoms. regardless of the diagnosis, any symptom affecting our quality of life should be addressed and appropriately treated.

we are all different of course, but what I would like to hear from my neuro would be something like:
"your brain MRI was negative, meaning you don't have a brain tumor, your EMG was negative, meaning you don't have ALS, your blood work was unremarkable. Your datscan was negative as well, meaning you probably don't have denegerative parkinsonism. we can't be absolutely certain at this point about the cause of your symptoms. it might be some form of dystonia, or even something temporary-some times even stress can cause parkinson's like symptoms- so we are gonna try some meds and see if something helps with your symptoms. in the meantime you should also try to reduce stress and exercise as much as you can. but you can relax now, because whatever this is it doesn't seem to be something serious".

then i woke up of course and heard my neuro say: "i'm sorry to tell you that, but i'm certain now that you have parkinson's disease. your progression is faster than i hoped. you should expect about 7-8 "good" years. you won't die of Parkinson's but you will live with this all your life, so you'd better start getting used to it"

so, that's what i would prefer to any diagnosis: a LIFE without a life-threatening or a degenerative disease.



Christie I am glad that many of my tests have been negative including the gene test for pd. I havent taken the datscan yet, and probably wont for awhile because of the outrageous bill I got for my gene test. However, I have taken many tests, it would be nice to get an answer. My latest test for testosterone should be in tomorrow. I know its low already, I will update on here. Thanks for all of your support, all of you are awesome people.

#28 Mihai

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Posted 13 January 2013 - 11:03 PM

Bren128,

I am certainly praying that you get some answers soon. I was diagnosed rather quickly, which I am thankful for. I've heard from many here who have gone for months and years waiting for a diagnosis...that wait has to play with the mind. PD is not a fun diagnosis to get, but at least there are some really helpful treatment options...and more on the way. I'm hoping to be in a clinical trial this spring for the pump...which much like the diabetic pump, delivers medication directly into the intestine, skipping the digestive tract. I'm not glad that I have PD, but I am glad that what I have is treatable and manageable and certainly not as bad as some other diagnoses I could have been handed. Whatever you find that you have, meet it head on and fight it with all your might. We are here to support and help you as you need it...

Peace and blessings,
Michael

#29 christie

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Posted 14 January 2013 - 06:24 AM

Bren: Two weeks trial of Sinemet IS NOT ENOUGH!! You need to give it at least 4 to 6 weeks and titrate up slowly. Please try it again!


Bren, Mary (xaxa) is right on this. See also a relative reply by Dr Okun ("levodopa trial") in the "ask the doctor" forum: "Our trials typically take 4-8 weeks and work up to 2.5-3 pills of 25/100 taken 3 or 4 times a day. Generally most experts like to get the total dose above 1000mg of levodopa a day, and 2.5-3 tablets per dose before giving up. Tablets are weaned slowly over many weeks if no effects (to prevent withdrawal). http://forum.parkins...levodopa-trial/

You should discuss this with your neurologist.Please remember: don't take any simenet without medical advice and supervision by a neurologist.
English is not my first language !

#30 KimAgain

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Posted 14 January 2013 - 09:07 AM

Namaste, Bren, we all cope in our own way. :)

#31 Bren128

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Posted 14 January 2013 - 12:49 PM

:) Well I got my testosterone test back and it was low at 220. This has been with me eating lots of cottage cheese which boosts testosterone. Could my low T be causing my parkinson like symptoms? Ive been feeling better since ive been eating the cottage cheese, my essential tremor isnt as bad but low wouldnt cause bradykinisia in my left hand fingers?

Im excited I got an answer!

#32 xaxa

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Posted 14 January 2013 - 03:51 PM

Sorry to burst your bubble Bren, but you might wanna save your money on this one....: http://www.scienceba...you-have-low-t/

#33 Bren128

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Posted 14 January 2013 - 05:18 PM

Well I'm not really buying anything, just going to eat more cottage cheese.

#34 KimAgain

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Posted 27 January 2013 - 09:48 PM

Bren,

How are you doing?

Kim

#35 Bren128

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Posted 30 January 2013 - 12:41 AM

Im doing good, The Amantadine is working somewhat but my arm/hand is still slow. My fatigue is better. My heart is still a mess randomly. Im very sensitive to heat, especially after a hot shower. Left side of my body stays hot, especially my ear after shower. Red hot. My feet freeze when I lay down though, even with thermal socks on. Mentally im sharp though. I would have to say I feel good, my essential tremor is getting annoyingly worse. Still no tremor at rest.

I kinda stopped looking for answer, just kind of waiting for something to happen. God will show me resolution. :)




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