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NicoleZ

A Poll: 3 questions

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Just trying to get an idea of the YOPD experience..... So here's a little poll :) Please add anything else you would like!

 

1) How old are you, and how long have you been diagnosed with PD ?

 

2) What medications are you on for PD - names and doses ?

 

3) What symptoms have your meds helped, and what symptoms do you still have ?

 

Here are my answers:

 

1) Age 38, diagnosed 6 weeks ago

 

2) On Mirapex ER, currently up to 1.5 mg daily

 

3) I no longer have my thumb tremor, daily headache is gone, I can do my pre-PD exercise routine, arm swings again, leg isn't dragging.....BUT, I still have episodes of extreme fatigue, discomfort in right shoulder and hip while sleeping, and episodes of stiffness - not sure if I need o increase the dose of med or if the med just doesn't help with these symptoms ???

 

Thanks guys!

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53, 7 months

 

Mirapex er, 3 mg a day

 

Mirapex has helped to get rid of : fatigue, stiffness, slowness, arms move a little better, tremor not as bad... over all just feel better most of the time.

BUT: Tremor left leg and foot is still present, left foot toes want to curl and tighten up, feel a little more nausiea and tiredness as of late. Also, my left hand finger are not doing well with the new colder weather, they get numb so i have to flex them.

 

Also, my wife says that i seem to be focusing on doing things too much, like working on things around the house... things that don't need to be done... possible compulsive issues?

 

One day at a time sister.

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1) How old are you, and how long have you been diagnosed with PD ?

 

51 diagnosed in April 2011

 

2) What medications are you on for PD - names and doses ?

Mirapex 1mg 3 times a day

 

3) What symptoms have your meds helped, and what symptoms do you still have ?

 

Helped reduce stiffness and slowness; still have foot drag and little movement in armswing; medicine causes drowsiness on some days

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1) How old are you, and how long have you been diagnosed with PD ? I'm 45, diagnosed in April 2011.

 

2) What medications are you on for PD - names and doses ? Requip, 1.5 mg/ 3X day total of 4.5 mg a day.

 

3) What symptoms have your meds helped, and what symptoms do you still have ? Not sure it helps much at all. Tremor getting worse. I'm in a good mood on this medication though. I call it my happy pills. I've lost about 25 pounds also.

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49, 9 months ago

 

Sinemet 25/100 4 times / day, sometimes 5

 

I can now walk without pain and without dragging my feet (no more cane!), and I swing my arms again. Tremors are better until the medicine wears off - then I can barely hold a pen and write legibly. The strange dreams with screaming in my sleep are gone.

 

Still struggle with extreme fatigue, and constipation.

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48, 8 months ago

 

Sinemet 25/100, 3 times a day

Azilect 1mg, once a day

Wellbutrin 100mg twice a day

 

Still struggling to find the right combo of meds that work for me. Stiffness, and the parky paw have gotten worse recently along with losing my arm swing again and the tremors are back. Probably just need an increase in the Sinemet dosage. I go to the doc in a week.

Edited by CynthiaM

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1) How old are you, and how long have you been diagnosed with PD ?

 

46. Diagnosed March 2010. Obvious motor symptoms since 2006, perhaps sooner.

 

 

2) What medications are you on for PD - names and doses ?

 

Sinemet 25/100, taken in 1/2 pIlls 2 - 2 1/2 hours between doses up to a total of 8 doses per day, but unless very busy and a long day I use 6, maybe 7 doses a day.

 

Selegiline 5 mg per day taken in 2 doses of 2.5 mg morning and noon.

 

Xanax 1/2 of a .4 mg tab before bed to help muscles relax. Other mess tried for this have had intolerable side effects.

 

Ambien 5 mg at around 11 pm.

 

COQ10 40 mg day for overall health - by prescription and free so why not.

 

I also have APS (anti phospholipid antibody syndrome)

Plavix 75 mg a day to prevent blood clots

Procylin 40 micrograms 3 times a day to prevent blood clots

 

 

 

 

3) What symptoms have your meds helped, and what symptoms do you still have?

 

When I'm perfectly dosed and "on:"

Walking speed back to normal, arm swing returns, limp disappears, balance normalizes, pain in neck and shoulders disappears, tremor disappears, anxiety vanishes, movements are fluid and natural. You'd never know there was anything wrong to look at me and I feel great.

 

Overdosed or off feel much the same too me in terms of muscle pain and headache. Overdose induces dystonia and dyskinesia. Wearing off induces dystonia, slowness, loss of balance, slowed speech, anxiety, muscle pain.

 

Ambien eases all symptoms too - if I take it and don't sleep I don't limp and can move easily in bed. If I do t take it, rolling over and adjusting blankets is quite a chore. Ambient easing my symptoms I observed long before diagnosis.

 

My neurologist gives me pretty free rein to choose medications and dosing, advising me to take what I need to how I need to in order to stay smoothly on throughout the day with the least amount of dyskinesia, hence the frequent small doses. I've been given a bunch of extra pills to keep for long days that I need to work or travel.

 

Before starting sinemet I was in bad shape, unable to shop in a supermarket, unable to walk 150 meters in under 20 minutes, unable to put on tights and needed to dress sitting down, falling on occasion. Sinemet is magic for me. The only thing it doesn't help much with is handwriting, which is now awful.

 

Interesting reading other responses.

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1) How old are you, and how long have you been diagnosed with PD ?

 

I am 45 years old, diagnosed April 2010, probably exhibiting some symptoms since around age 30.

 

2) What medications are you on for PD - names and doses ?

 

Azilect, 1mg daily

mirapex .5mg 4 x daily(insurance won't cover ER)

namenda, 1mg 2 x daily

aricept, 10 mg daily

 

3) What symptoms have your meds helped, and what symptoms do you still have ?

 

Mirapex helps with muscle stiffness, but still have bad days.

Namenda and Aricept help with cognitive issues and depression, these have been greater issues for me than physical ones.

 

Rob

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1. How old?

 

41...diagnosed @ age 38 January 2009

 

 

2. Medications?

 

Azilect 2 mg & Requip XL 4 mg / daily

 

 

3. Symptoms?

 

Tremor better...fatigue, discomfort in neck and shoulder, stiffness, leg drags, arm doesn't swing, get jumps in legs when lying down, don't sleep well

Edited by Gary K

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Good Thread NicZ,

 

Age 53, pd for 5 years

 

Medicine,

Azilect, requip 6 mg a day and Sinemet

 

Symptoms include, rigidity in the right side, bradykinesia in my hand, can't write well,can't smell much. Trouble recalling names now, can't sleep for much more than 4 hrs at time but I'm doing pretty good and still working as a carpenter.

 

jb

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Dont have PD have ET DX 16,take Mysoline 750mg 3 per day,propanolol 240mg3 per day,venlafaxine 75mg 1 per day,clonazepam .5mg 3 times per day,still shake like a leaf and im stiff,walk bad and have no energy and like to sleep alot :mrgreen: oh and im 44 thing can only get worse as the song goes! :-D HOWDY DOODY EVERY1.....

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Age 46, dxd in Feb, 2000 but symptoms for 5 years

 

Meds: started Azilect 2 years ago which did not help symptoms but hoping for nuero protection

started in August, 2011: Mirapex ER 1.5 which helps with neck & shoulder pain, handwriting, stiffness, slowness, sleeping, frozen shoulder gone! Great

success for those symptoms but not helping tremor which is progressing.

started in Oct: Sinemet 25/100, 1 pill 2x per day hoping for tremor relief. Meds caused severe nausea, headaches. Went down to 1/2 pill 2x per day and

had same side effects. After 6 weeks, stopped sinemet all together and now feel much better except for tremor. UGH!!!

Back to MDS in December to see if we can find anything for tremor relief!

 

Thankful symptoms are controlled except for tremor and I am able to function well and continue to work!

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46 - 47 very soon - Found out I had Parky flu about 2 years ago.

 

sinemet - 25/100 - 8 tabs a day - time release at night - 50/200 - This is the med that keeps under control.

 

Mirapex - .5mg 3x a day

 

Azilect - 1mg

 

Nortriptyline HCL - 50mg - helps depression and sleep

 

Treximet - 85/500mg - migraine headache med - take as needed

 

Lorazepam - 2mg as needed - take when i am really stiff

 

metamucil - helps keep the pipes clean! Very important!!

 

Don't sleep much - shaky - stiff - having balance problems now use a cane - still working but on the fence!

 

Great topic! Nice to see what others are using and how their doing!

 

Peace and Health,

Jack

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41 years old, diagnosed at age 34 in 2004.

 

Meds: sinemet 25/100, half a tab 3 times a day

Mirapex 1mg 3 times a day

Amantadine 100mg, 3 times a day

 

Helps with mobility, dystonia, tremor, rigidity, bradykinesia, handwriting... Just still have alot of stiffness mostly and poor dexterity on my right side. Dyskinesias too. Lots of low back pain from stiffness. And of course some other med side effects...

 

Mary

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Dont have PD have ET DX 16,take Mysoline 750mg 3 per day,propanolol 240mg3 per day,venlafaxine 75mg 1 per day,clonazepam .5mg 3 times per day,still shake like a leaf and im stiff,walk bad and have no energy and like to sleep alot :mrgreen: oh and im 44 thing can only get worse as the song goes! :-D HOWDY DOODY EVERY1.....

 

Hey Carol, glad to see your still posting. howdy doody to you too

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Nicole,

 

Great thread. My answers:

1) How old are you, and how long have you been diagnosed with PD ?

 

52, 6-1/2 years

 

2) What medications are you on for PD - names and doses ?

 

Azilect - 1 mg

Requip XL - 8mg 2xper day

Stalevo - 100 mg first thing in the morning then 50 or 75 mg every 3 hrs until 6 or 7 p.m.

COQ10-1200 Mg

Creatine (clinical trial)

 

3) What symptoms have your meds helped, and what symptoms do you still have ?

 

When meds are on, all symptoms except some tremor are diminished.

 

 

I cannot emphasize enough the importance of exercise. This disease is definitely "use it or lose it".

 

Good luck!

 

Randy

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I am 33 and was diagnosed 1.5 years ago

I'm on NUPRO patch 4mg Low dose Naltrexone 1.5mg Azilect 1mg and Isogenix ageless male suppliments and coq10 1300mg

Since LDN and working out 5 days a week I have lowered my NUPRO patch from 6mg to 4mg and most of my shaking is gone. Doing certain tasks at work have made me worse than normal like mudding and taping drywall makes me sleepy and sore. But most days I feel GREAT now. Even doing tough mudder race and other local races and going to train to summit MT. Adams in Washington with a Physical Theripist friend of mine in the summer. Got to stay in shape and driven to keep this up but its worth it in the long run. jer

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Just trying to get an idea of the YOPD experience..... So here's a little poll :) Please add anything else you would like!

 

1) How old are you, and how long have you been diagnosed with PD ? 58, one year

 

2) What medications are you on for PD - names and doses ? Sinenet 25/100 4x/day, Donepezil 10 mg daily

 

3) What symptoms have your meds helped, and what symptoms do you still have ? Sinemet helps tremor, dystonia, bradykinesia, shuffling, stooped posture, arm swing. Donepezil helps with dyskinesias. Still have stiffness, muscle rigidity and pain, inability to multi-task without increasing symptoms (like being unable to turn my hands over and back again repeatedly without having unwanted movements in my leg or mouth/tongue), cognitive deficits, swallowing difficlties, feeling of a hair on the back of my tongue, fatigue.

 

Here are my answers:

 

1) Age 38, diagnosed 6 weeks ago

 

2) On Mirapex ER, currently up to 1.5 mg daily

 

3) I no longer have my thumb tremor, daily headache is gone, I can do my pre-PD exercise routine, arm swings again, leg isn't dragging.....BUT, I still have episodes of extreme fatigue, discomfort in right shoulder and hip while sleeping, and episodes of stiffness - not sure if I need o increase the dose of med or if the med just doesn't help with these symptoms ???

 

Thanks guys!

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