I was diagnosed 8 years ago, and my left side has gotten really bad but I still have no symptoms on my right side. Very strange since everything I have read says that PD always starts on one side of the body and then spreads to the other. My left side got SO bad (dystonia, arm muscle cramps, stiffness, incredible leg pain, resting tremor, plus a host of the non-motor symptoms) that I had DBS surgery in 2010 - but only my right brain. I'm better now. Every time I tell a neurologist that it still has NOT spread to my right side and-don't-you-think-this-is-interesting-shouldn't-it be researched-further, the ho-hum response is always along the line of "well, it probably has, you just don't feel it yet" to "wait 20 years and THEN it'll be worth looking into."
Is there anyone who has had PD for 5 -10 years+ but only has symptoms on one side of your body? I would be interested in knowing. My severe symptoms affect the left side of my face, arm, hand, leg & foot. My right side is fine. Am I the only one to think this is odd? I have no doubt about my original PD diagnosis in 2003 since I responded instantly to PD medication I was given at that time.
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jazzfan53
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My husband had it done bilaterally ten years ago, and for him it was totally worth it. I have not had it done yet...been dx'd twelve years ago, at age 34.
10 years since my initial diagnosis and am only experiencing symptoms on my left side. i have left foot twitches and cramps when my toes posture, reduced mobility in my left arm, reduced useability of my left hand, pill rolling with my left hand and a slight left limp. My left arm does not swing. Occasionally my left leg freezes.
I am lucky that my symptoms are light enough to hide unless I'm tired, hungry, cold or stressed.
I started getting PD symptoms on my right side 7 or 8 years ago. It affects only my right side (and I am/was right-handed). The first neurologist I saw did not diagnose PD because my symptoms were changing during the ~1 year I saw him. The next and then my current (3rd) neurologists are struck by how much it affects my right side without affecting my left (that I can perceive). So, jazzfan53, in that respect (not so much with the particular symptoms), my case is a lot like yours.
Among other meds, I was recently on carb/levadopa at 900mg/day, but was having too much dyskinesia. So, that's been reduced to 750mg/day and Requip XL was added. Amantadine had earlier been added when my carb/leva went up to 900mg in anticipation of the dyskinesia. If my PD wasn't so asymmetric, I presume that the dyskinesia would have been less of a problem. I wonder how others like me treat the PD without causing too much dyskinesia. I suppose that varies a fair amount by individual. Anyway, I think my current neurologist is quite good, and we'll find some combination that works about as well as one can.
Hi Paul, I know it's been 4 years since this, but I'm exactly like you, they did a genetic blood test and found out it was Parkinsonism plus, which includes dystonia on my right side but the dystonia is everywhere.
I have exactly same situation-- right side only affected- left side no effect whatsoever---since 2006 diagnosis... taking 1000mg carbolevadopa + 12mg requip XL daily....l am researching 'atypical' parkinsonism 'since strictly unilateral features and poor response to large carbolevadopa dosage is "exclusion criteria" for
'typical' idiopathic parkinson's which typically spreads to contralateral side within 3 years of symptoms appearing... if it isn't effecting contra lateral side... after 3 years....start looking for 'atypical' causes.....doing my own research...cannot get doctor's interested...have an MRI / MRA of head and neck...have tests for "mimic's of parkinsons' disease (normal pressure hydrocephalus is one)...have doppler test for abnormally low blood flow velocity and blood volume... to brain.... look for ischemic lesions 'mini strokes' in the basal ganglia...can cause movement disorder .....I am looking into chronic hypoxic ischemic low flow hypoperfusion of brain circulation and cumulative progressive damage to basal ganglia caused by this.., since I only have one vertebral artery functioning that might have caused ischemic changes seen on MRI images of my basal ganglia ... ischemic activity progressively can cause unilateral parkinsonism.....look for bi-lateral hypodensities (CT scan) and hyperintensities (MRI) ... which are sometimes indication that ischemic activity is going on... sometimes low flow caused by plaque has to be addressed medically...but mechanical compression of arteries to brain causing ischemic mini strokes can sometimes be corrected by surgery... might not cure symptoms, but in theory it might stop progression of low flow ischemic hypoxic brain injury ...of course the point of looking further .. in the case of 'atypical' parkinsonism which can be caused by many other systemic diseases....is to seek more precisely targeted treatment that might halt or slow progression, or more precisely target symptoms ...so as to avoid unnecessary and endless experimentation with antiparkinson drugs... side effects. etc. No doctor I have met so far has any interest is looking further.... you have to do it yourself ... and then try to convince them that you are onto something... good luck !
Hi truth seeker, I had the same problem but I was sent to see a specialist and truthfully he told me I was a challenge for him, since then he has been investigating and came to the result of atypical Parkinsonism gene mutation, so I have inherited the disease from my family going back. No one ever did any tests on me but this professor did and he has completely turned himself in to my problem. And I'm very grateful for this. Hope you have luck with your investigation.
Very interesting truth-seeker. I'm now having it 3 years, not so much Sinemet, dealing also which Parkinson-medication works really.........only the right side (I am left handed), but I have to say more and more the whole right side. Yet, still I can swimming.
Could that be a partly explanation, that hypothesis with the TMJ (see Dr. Dwight Jennings, Dr. Brendan Stack, Dr. Demerjian) ???
And also this German doctor who looks at a lot causes >>>> Dr. Joachim Mutter, heavy metals, Borrelien, Amalgam fillings and (a bit freaky, he is in that), elektrosmog.
Here is his website with some english articles >>>>>> first a remarkable case (unfortunately in german) >>>
I just got diagnosed one month ago with Parkinson’s I only have symptoms on the right side. On my MRI They found chronic micro vascular ischemic disease & hydrocephalus of the lateral & 3rd ventricle...the dr. Seems very uninterested. I cannot find a doctor that treats or investigates NPH or any other condition that is not with the same health system as my Neurologist. Very frustrating...I was misdiagnosed with essential tremor by 2 different docs for 2 years. My doctor is a movement specialist and on my first visit she told me “nothing presents with the tremor you have except Parkinson’s”. I am trying to investigate other conditions myself now because I feel like she came to the Parkinson’s diagnosis too quickly & she seems to have tunnel vision.
I was diagnosed over 5 years ago and still only affected on my right side and luckily I am left handed. I got straight on meds and apart from washing and drying my hair and domestic chores like veg prep and ironing I manage at home. I still work full time although keyboards are a struggle. I go to the gym and drive on a 3 yrly licence. I do think about the future of course and how I will cope if my left side is affected. I need to work to 65 and hope I can.
Hi, yes it can affect one side of the body only, that's mine, it's called Atypical parkinsons, in another words Parkinsonism. But they like to categorise it under parkinsons. It's a bit more complicated than th ordinary parkinsons but hey we still have to struggle on. Hope all is ok.
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