PD and NonTremor Related Symptoms

Stella_Marie · December 17, 2005, 11:29am

I am desperately seeking the right combination of Parkinson's medications to cover non-tremor related PD symptoms. My original tremor is well controlled now, except in high stress situations (dopamine drainers!). My problem is the control of rigidity, muscle spasms, shuffling, neuropathy (numbess and tingling of the feet and hands) and what I call internal tremors (wave-like muscular contractions). My movement disorder specialist's solution always involves raising sinemet. I either metabolize medication rapidly, or their effectiveness is just not there - I starting experiencing "off" times 1 1/2 after each sinemet dose. Currently I am taking Sinemet 25/100 every two hours, Comtan every 4 hours, Mirapex and Klonopin at night for break thru dyskinesia's. I am off to see the Wizard next week (my neurologist) - does anyone have any recommendations that have worked for them regarding the control of non-tremor and neurosensory PD symtoms. Do you think i am eligible for a new brain from the Wizard?

You might have to grow old, but you never have to grow up....

yekkimo · December 17, 2005, 12:42pm

Stella,

try Stalevo,you will be taking the comtan in conjunction with the sinemet.You might also try taking mirapex with the sinemet during the day.Sounds like you need a med tune up.Keep the brain intact.Wish you the best good luck at the neuro.Ed

Ed-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.

GLambert · January 9, 2006, 1:35pm

Stella,I'm fairly new to PD problems similar to yours, original tremors under control except in stress,if I laugh and talk( & I do quite a lot ),tingling & numbness in hands and feet loss of balance and the shuffling gait is becoming quite a bother.Meds are madapar cr and sinamet plus.I phoned my pdns ( my angel ) she is coming in 2wks.Hopefully she will sort me out.Reading your note tells me I am not alone & gives me hope.Many thanks...Grace

Stella_Marie · January 10, 2006, 10:13am

Glambert,

Welcpme to the Healing Well site. I have made some great supportive cyber friendships and there is a wealth of information that eveyone is willing to share. Sorry to here about your journey into the world of neurodegenerative diseases. You last line is the key - "you are not alone" in this!

Since this posting, I have been reevaluated by one of the top Movement Disorder Specialists in the country. I was frustrated with the progression of my "so called Parkinson's and it's atypical presentation. Unfortunately, 2 visits and several tests later, my diagnosis has been changed to MSA (c) {Multiple System Atrophy (cerebellar) with additional parkinsonian features}. It turn's out that one in ten PD'ers potentially have a form of MSA. Because a diagnosis is diffcult, patients must wait until specific symptoms develop in order to to make a differental diagnosis. For me, about 9 months after my original "PD" diagnosis, I realized my disease was following a non-traditional path. Tremors were no longer the mainstay. Rigidity, bradykinesia, dyskinesia, freezing, numbness and tingling in my extremities, muscle spasms, loss of responsiveness to L-dopa (sinemet) became the predominate clinical features. Also at the 9 month mark, I started showing autonomic symptoms (slight incontinence, temperature flucuations, light headedness...etc) as well as some visiual abnormalities which included nystagmus and glaze problems. Although the new diagnosis is no picnic, I am relieved to know what I have. Right now I am 18 months into having this disease. Parkinson's, as difficult at it is, is a walk in the park compared to this.

I pray that what you have is just a odd presentative of Parkinson's. Everyone's PD presents differently and progresses at a unique rate. Do not jump to conclusions or fear the worst. However, if you feel that your presentation is extremely atyipical, I urge you to find a top notch MDS (even if it means traveling) and get a reevaluation. MSA is usually diagnosed as PD first....until ore specific clinical signs arise.

I wish you peace in your neurodegenerative journey - and I am also here for your support. Do not be afraid, knowledge is power. Please feel free to contact me if I can provide you with any additional information.