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New Diagnosis...Pretty Worried.

tremor azilect fear

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#1 eaglewoodwill

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Posted 20 October 2013 - 07:23 AM

Was diagnosed by a fairly prominent MD doc on 10-17.  I am 47 and have had left leg and foot tremors, left arm rigidity and gait issues.  I also had a treatment for Lymes (5 of the six bands positive).  Doc mentioned a DAT test to more strongly confirm the diagnosis.  In short, whatever it is, I am terrified.  The message the MD Doc gave me was "You are the same guy who walked in the door of this building an hour ago.  Your diagnosis changes nothing about who you are and what you do."  I have not started any meds due to the pending DAT test, but if needed, I am leaning toward Azilect. I look forward to your thoughts.  Thanks for letting me sound off....Will



#2 Island Woman

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Posted 20 October 2013 - 09:57 AM

Will, sound off as much as you like....we all do it ...some days when we want to share good feelings and other days when we need a shoulder to lean on...great bunch of people here with a wealth of knowledge....we're marching with you.

 

Patricia



#3 sarahjo

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Posted 20 October 2013 - 10:39 AM

Will, we are here for you, its a dx you don't want yet you want answers, we all understand, you are right your dx. DOES NOT change who you are or your abilities. what is helping me at this time is just take one day at a time, try not to focus on symptoms, (its tough some days and not so bad another) get involved in something outside of yourself. I know this may sound pretty simple but trust me its tough at first. but in all honesty some one just asked  the other day how I keep going two things, 1. I am a believer (Christian) this helps me, others have their way, and 2. think of others try to do something for others or help them. and 3. (I know I said 2) this one is remember to be kind to yourself, and if you need a break take a break, ( some ppl on here exercise, some meditate, some serve others, some do whatever but YOU WILL find what works for you. I am sorry you are here due to I don't wish this on anybody, and yet I am grateful you are here. We don't know you yet but we already love you and appreciate your thoughts, and knowledge as you learn, share you never know who you will help.. Bless you Will and I will be praying for you. Sarahjo



#4 Beau's Mom

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Posted 20 October 2013 - 11:52 AM

Welcome, Will. Whatever may come, we will walk you through it!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#5 lu states

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Posted 20 October 2013 - 01:22 PM

will, i for one, knew i was going to be diagnosed, so when he said it, i just thought " of course ".   so i had the luxuary of not being bowled over by a sudden, un-expected diagnosis.  although over the 10 years of slowly getting it ( tremors first ), it has sped up a bit, but the only challenge is wondering what is next.  your situation, your symptoms might stay like they are for some time.  or there might be a small change, but not much.  you never know with p.d., but my med ( mirapex ), which i was taking for RLS, although stronger now, can keep my symptoms at bay.  yours may do the same for you.  try not to be frightened.   there are days with minimum stress, that i have very few symptoms at all.   stress is a trigger for me.   your dr. is right, you are the same man you were, and even on the outside, you may improve and or not change on the outside, for quite a long time, you never know.  come here with questions, which may or may not get answered :), but everyone here has heard that diagnoses before, and we all know, if not how you feel, but understand where you are coming from.   i wish i could take your fear away for today, so you could have a nice, fearless sunday, but i've tried that exchange, and it doesn't work.  also, somedays one thing might be stronger, another more relaxed, it is a new day every day.  i hope when you finally go on some medication, it helps.  remember though, if it doesn't, or have side effects you don't like, there are others.     good luck with all that, and come here as often as you like !       best,   lu



#6 PatriotM

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Posted 20 October 2013 - 04:50 PM

Will,

 

It sounds like we're in almost exactly the same situation.  I have late stage, chronic (neuro) lyme disease and was recently diagnosed with Parkinson's Disease (PD).  My PD symptoms are almost identical to yours:  left hand and foot tremors, balance problems, degraded left arm swing, etc. 

 

My LLMD (lyme literate medical doctor) thinks that the lyme disease may have caused the PD.  The neurologist that diagnosed me with PD thinks that may be the case also.  I wasn't surprised by the diagnosis (only that the neurologist diagnosed me in one visit).  I also wasn't that concerned because having a doctor write PD on a piece of paper didn't change ANYTHING!  Furthermore, what's really the difference between having one incurable (but treatable) disease like Lyme Disease and having two?  In fact, the PD symptoms aren't that much different and certainly not worse than lyme disease symptoms.



#7 eaglewoodwill

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Posted 20 October 2013 - 07:30 PM

All - Thanks for the feedback.  I will be sure to use this site as the journey continues...@PatriotM - I will be sure to chat about Lymes with my MD Doc to get his thoughts.



#8 sarahjo

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Posted 20 October 2013 - 07:31 PM

Will been thinking of you all day, do wish that when you read all these post you know that once you become a pd family member you are loved, and there is always someone here for you. Bless you, The med. for me has been the sinemet, and sinemet er. they have worked and you could say they came at the right time. Bless the days to come. Sarahjo



#9 PatriotM

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Posted 21 October 2013 - 06:37 AM

Why not post info about your compound here for everyone to discuss? Why the secrecy?

#10 Island Woman

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Posted 21 October 2013 - 07:01 AM

Secret compound guy is back again...I also have an ocean if any one is interested....will deliever.



#11 sandybette

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Posted 21 October 2013 - 03:24 PM

Will - don't get into a tizzy over the diagnosis - agreed, it's not wonderful, but, as I've seen where we live in a retirement community, things could be lots worse (Lou Gehrig's Disease, scleroderma, stroke, cancer, etc.).  Here, we have quite a few PWP who have lived happy, productive lives w/ PD for several decades.  Yes, moving around and tremors & other symptoms are frustrating, but there is help out there - and research is constantly searching for ways to assist us.  I'm 66, diagnosed last yr. - taking Azilect only - can't decide whether to get on other meds @ this time.  My neurologist recommended Azilect for its possible neuroprotective aspect, but said it'd probably not help the tremors/falling/other problems (& it hasn't).  A friend, who is a neurologist where we used to live and has reviewed the studies, believes that Azilect is probably worthless. My neurologist felt that the DAT scan was unnecessary (as did my friend), so I haven't bothered w/ it - & it's probably an expensive item that really doesn't make any difference in the long run (though I'm sure doctors would like to order one to cover themselves by ordering one) - (and, apparently, you really need to be an expert to read one, so how would a patient know if an appropriate person read it?).  So - who knows?  Live your days as fully as possible, exercise lots (apparently the best "medicine" available) (both body & brain), enjoy the people in your life, don't obsess about the future, and, above all, keep a positive attitude.  Also, keep communicating here - we all seem to rally around one another - and it really helps to realize you're not alone.  Thanks to everyone for pitching in.



#12 eaglewoodwill

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Posted 21 October 2013 - 05:58 PM

Will - don't get into a tizzy over the diagnosis - agreed, it's not wonderful, but, as I've seen where we live in a retirement community, things could be lots worse (Lou Gehrig's Disease, scleroderma, stroke, cancer, etc.).  Here, we have quite a few PWP who have lived happy, productive lives w/ PD for several decades.  Yes, moving around and tremors & other symptoms are frustrating, but there is help out there - and research is constantly searching for ways to assist us.  I'm 66, diagnosed last yr. - taking Azilect only - can't decide whether to get on other meds @ this time.  My neurologist recommended Azilect for its possible neuroprotective aspect, but said it'd probably not help the tremors/falling/other problems (& it hasn't).  A friend, who is a neurologist where we used to live and has reviewed the studies, believes that Azilect is probably worthless. My neurologist felt that the DAT scan was unnecessary (as did my friend), so I haven't bothered w/ it - & it's probably an expensive item that really doesn't make any difference in the long run (though I'm sure doctors would like to order one to cover themselves by ordering one) - (and, apparently, you really need to be an expert to read one, so how would a patient know if an appropriate person read it?).  So - who knows?  Live your days as fully as possible, exercise lots (apparently the best "medicine" available) (both body & brain), enjoy the people in your life, don't obsess about the future, and, above all, keep a positive attitude.  Also, keep communicating here - we all seem to rally around one another - and it really helps to realize you're not alone.  Thanks to everyone for pitching in.

Everyone - thanks for the support and guidance - it means a lot.



#13 eaglewoodwill

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Posted 21 October 2013 - 05:59 PM

Everyone - thanks so much for your feedback and guidance.  It means a great deal.



#14 Vette4me35

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Posted 22 October 2013 - 10:39 AM

Hello everyone. I was newly diagnosed with PD and am 44 years old. Is there anyone who has delayed taking any meds until you noticed any additional symptoms? The only symptoms I have at this time is a tremor in my left hand.



#15 Beau's Mom

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Posted 22 October 2013 - 12:36 PM

Dear Vette4me35,

 

I went undiagnosed even with obvious symptoms for so many years that delaying meds was not an option. It's not just meds, though. There are many things you can do to minimize the needs for meds and to keep healthier longer. You need a Movement Disorders Specialist not just to decide if you need meds, but to order Physical Therapy, Occupational Therapy and  Speech Therapy evaluations. These therapists can then prepare on ongoing at home plan to keep you going strong much longer than you might if you simply sit and home and wait for more symptoms to appear.

 

If there ever was a disease that can't be cured or it's progression stopped, but the impact of symptoms on quality of life can lessen the impact of progression, it is PD. Learn everything you can about how to handle the symptoms with lifestyle changes as well as meds. Exercise is key, but it must be PD specific exercises. Brain exercise is also key. Learning to fall correctly is important because it is not a matter of if you will fall, but when you will fall and how badly you can get hurt.

 

I so wish I had been diagnosed 15 or 20 years earlier than I was, so I could have been delaying or minimizing the effects of PD. It might have allowed me to work longer than I was able to, function better, use my time and energy more wisely.

 

Learn about how your body has already been affected. Then actively utilize proven techniques that will help you live a better quality of life well into the future, even as your PD progresses every day. You can't change that you have PD, but you sure can live the best possible life with it if you are educated about the many ways to help yourself!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#16 PatriotM

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Posted 22 October 2013 - 04:38 PM

Hello everyone. I was newly diagnosed with PD and am 44 years old. Is there anyone who has delayed taking any meds until you noticed any additional symptoms? The only symptoms I have at this time is a tremor in my left hand.


Yes, I'm waiting to take any PD specific meds until PD hinders my daily functioning. I have resting tremor in my left hand and foot, balance issues, speech problems, etc. The speech problems are likely more due to my lyme disease than the PD.

#17 christie

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Posted 22 October 2013 - 05:04 PM

Vette4me35 welcome to our forum !! (your name, pleeeeeease? LOL)

 

I delayed starting meds for 3 years following my diagnosis. I was started on levodopa when I could hardly walk...I shouldn't have waited that long. As the disease progresses symptoms worsen, higher doses of drugs are needed to address them, and drug side effects prevail.  I'm not saying you should start treatment immediately, especially  if your symptoms are mild and you are fully functional. just don't wait until your quality of life is severely affected.

 

Remember, until this day, there is no disease-modifying drug or treatment for PD, and the only treatment available is simply symptomatic. So, the decision as to when to start treatment depends almost entirely on the severity of your symptoms. And nobody, but you and your neurologist, can/should affect  this decision.


-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#18 farrist1

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Posted 01 November 2013 - 08:51 PM

I'm newly diagnosed as well, tremor in left hand developed Jan 2012 and my primary care doc said "probably nothing, but you should see a neurologist".  First one, spent 10 minutes with me and said "you have Parkinson's"  turned and started typing in her computer.  I was SHOCKED.  I instructed her not to write it down, didn't want it on my medical record.  I had RLS for years, but have tried 3-4 different statins for high cholesterol, thought leg cramps and RLS was due to statins, stopped each one prescribed. I have osteoarthritis in my right knee, sleep apnea and Type II diabetes, I guess I missed symptoms by always blaming it on something else.  My primary care doc was as surprised as me and referred me to a Neurologist that specializes in PD, saw him  in late Sept.  he confirmed diagnosis.  Put me on azilect.   Prior to Sept. I was worried, but in denial, After confirmation, I accepted it, but within a month of the azilect, became so fatigued.  Neurologist saw me 6 months later, said no change in symptoms.  At first I didn't want anyone to know, but finally had to start telling family and friends.  My husband passed away in May 2013 and primary care doc put me on an SSRI antidepressant, I've read that MAOI and SSRI should not be taken together.  Seems my tremor is getting worse and now more prevalent in right hand as well.  Anyone have any thoughts on taking antidepressant and azilect together?



#19 sarahjo

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Posted 02 November 2013 - 02:20 AM

I started taking med as a means to diagnosis, I had many symptoms for over five years and they were starting to really cause issues in my daily life, but didn't give up trying to find out what in the world was going on, I couldn't turn over in my bed by myself couldn't get up in morning had to have my husband lift me to edge of the bed  so I could sit up or one of my children come in and give me their hands to get to slide to edge of bed to sit up, the tremors became more and more noticeable burning and tingling on right side lots and lots of symptoms but finally my balance got to the point I was falling into the wall, and I was out walking with a friend and I fell on my face. so after three neuro dr. finally changed primary dr. and then he sent me back to the neuro surgeon that did my cervical fusion and they sent me over to the neurologist where I am now and his specialty is neurological diseases like ms, pd, l-gs, and he after looking over my records since 2003 when I first stated complaining that there was something weird going on to 2005 when things really started more consistently to 2013 dx. we have upped meds now three times, I thought finally we were on tract, and now I am waking up about 330am every night for this past week shaking its weird cuz I am taking the sinemet er at 9pm and am suppose to take next dose at 6am I am not sure what to ask for next but I will be calling them on Monday and find out what to do. that's why I started taking meds right away. cuz I was already at the point pd was fully active. long story but I hope this helps



#20 Beau's Mom

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Posted 02 November 2013 - 09:08 AM

Sarahjo, my MDS has me taking an extra carb/levo 25/100 CR between midnight and 3 AM if I wake up because my 9 PM doses never last until 6 AM anymore. You might ask your MDS about that. I take either regular carb/levo 25/100 or a combination of regular and CR every three hours from 6 AM through 9 PM.


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.





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