This is my first post and I am looking for help re Atypical Parkinsons.
I have suffered over the last 20 years with Dystonia and Fybromyalgia, I also have Nephrotic syndrome. Just over 3 years ago after having brain scans and various examinations and tests my neurologist diagnosed atypical parkinsons due to dopamine defiency in brain and symptoms including rigidity,resting tremor,extreme fatigue,constipation,facial expression,reduced arm swing,frequent violent nightmares,inability to button shirts and tie shoelaces and other motor and non motor problems.
I have had sinemet increased from 100 to 250/25mg x 5 times a day.I stopped taking madopar due to increased nausea and fatigue.
What worries me is that no decision has been made yet regarding which type of parkinsonism I have.If anyone can shed any light I would be forever grateful as I am left just anxious about the future.
Kind Regards,
Jim.
Written by
juiceter7
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My very first Neuroligist was a brilliant leading doctor / PD expert who died far too young . He predicted 15 years ago that some day what we now know as PD will become ten to twenty different named deceases in the family Parkinson. We do not (especially at on-set) share all the same symptoms nor share the same intensity of each symptom nor share the deterioration or onset rate and it all changes as we progress. I am not aware that "types" have yet been assigned. Please advise what types of PD you are aware of.
There are so called Parkinsons-plus deceases that each have their own identity that start out looking like PD but are quickly identified and re-diagnosed because the PD medication does not help them. Are you saying you have one of these ???????????
There is also Young Onset Parkinson's and Welders Parkinson's
I am not sure you are going to get an identification further classifying your PD. Your symptoms seem very typical and similar too mine. Why the Atypical designation ???
It seems cruel for the physician to leave you hanging like that, you have the right and the need to know what your are facing. My understanding is this: if you request testing it has to be honored. Have you undergone autonomic functioning tests? Heart Rate Variability Testing would be a good place to start to diagnose dysautonomia. An eye exam with specialized testing by a neuro-ophthalmologist can help narrow the differential diagnosis.
Just curious - are you a veteran or a farmer? There are no ethics in medicine if you've experienced an illegal toxic exposure due to legally protected activity (like farming) or were government property.
thankfully we live in a small town so mainly home properties around us, one small vineyard run under organic practices too. I guess the cause doesn't matter to us
Thanks for all your responses.When I refer to types I better explain that in the past I have had skin and muscle biopsies,heart scan,blood tests and lumbar puncture all of which were negative. I had brain scans and emg which were both positive.The first neurologist said that the emg had went of the scale resulting in a strong diagnosis of cervical dystonia and that emg tests on legs were less conclusive but there was still a slight positive reaction and I would need further tests in future,still waiting 2 years later.
My current neurologist did not think at the beginning that I had idiopathic parkinsons but that it was much more likely that it may be one of the parkisons plus syndromes. However after 18 months of sinemet 250/25mg x 5 times a day I have found that the rigidity in arms has loosened a little and botox neck injections have had same effect.The other symptoms such as nausea,fatigue,short term memory loss,cramping in legs and feet,back pain,nightmares,constipation,erectile dysfunction,migraine,speech,swallowing etc have not really changed and if anything have worsened.
I understand the dilemma the neurologists have in tying this down to a specific diagnosis when there are so many conflicting symptoms and reactions to medication.My only ray of hope I suppose is that results of 24hr urine samples displayed significant ammounts of copper and protein in urine and I have to attend Endocrinology to test for possibility of Wilsons disease.
I should have stated that I was first diagnosed with parkinsonism at the age of 51 and am now 55 and live in the north of Ireland.
Hi Jim, Definitely the high levels of copper and protein complicate diagnosis for doctors. I firmly believe that Parkinson’s actually consists of many separate sub-groupings, which might explain the wide variance in symptoms by patient’s. Many researchers would agree with me, as previously posted in this forum. Actually, I prefer to call PD a neuro-degenerative disorder, with symptoms occurring where neuro-degeneration occurs, whether it be in the substantia nigra or has spread elsewhere. I am on Sinemet and it help with tremors and some stiffness; however, it doesn’t seem to help me much with autonomic symptoms, such as constipation, erectile dysfunction, swallowing and speech. I also get nightmares and migraines, but my neurologist has prescribed me Topomirade for that, and it works fine. No more do I have migraines or nightmares. A movement disorder specialist and seeing an endocrinologist might help you bring the pieces of the puzzle of your many symptoms together for a second opinion/or, perhaps, supplement your current neurologist’s diagnosis of Parkinson’s Plus. I surely can empathize with what you are going through. Best of luck to you in your quest to nail down all of your symptoms with the proper diagnosis.
Thanks so much for for your informative reply. I take each day as it comes and always live in hope for a positive outcome. I empathise with you and genuinely hope that your symptoms and your overall wellbeing becomes more manageable and less severe. Wishing you good luck now and into the future!
I go along with your notion that PD has relations to diverse neurodegenerative disorders, juiceter7. My husband also had Alzheimer's which has 36 possible causes but obviously not all people with AD have every one of the 36.
I have been diagnosed 2 years ago. my neuro says i have a form of parkinsonism bc a lot of the symptoms ii have are not typical of pwp. at the time i had stiffness on o ne side, extreme fatigue, my balance and mwy gait where not the bet.i started on pramipexole for 3 months - no change in symptoms (stopped) started on Sinemet 1 pill 3x per day (6 months - no improvement- felt no difference
So, slowly i was increased to 4 pill 3x per day to see if the increase would eventually help me. At the same time my symptoms became much worse ( i had many more freezing episodes, started falling between 3-10 x per day - backwards and forwards, my speech became incomprehensible. and I always felt like my brain was foggy and slow.. to see at what point
At the time i was a teacher and my walking, talking and hand writing all go much worse. I assumed my PD was progressing vry rapidly.
After about 7 months i decided to start tapering down on the meds. If I was NOT feeling any improvement why take them. . i weaned my self from 4 pills 3/day to 1 pill 3x/day very slowly . i reduced one pill every 7-10 days. it took about 2-3 months. I did this with my dr permission .
I can only say my speech has improved - speech therapy
My brain function as far as following peoples conversations, listening skills/abilities all feel so much better.
My falls have decreased tremendously and my handwriting is still horrible.
foot and leg cramps- remained the same
constipation improved with lower dose. -- but better by drinking kefir
My arms and legs are still stiff -
'I hope this helps. Everyone s unique in their PD. Because you don't feel btter on is does not mean u don't have PD.. According to my neuro,I have a parkinsonism.. to me that is the same as PD. Remember, some pwp take meds some don't.
I would prefer to go more the natural route but for now this is where i am and what i am taking .
It is so difficult to find the right solution to symptoms of parkinsonism never mind the precise diagnosis. I think it is a matter of waiting and seeing how the progression of this disease affects us.
Have u had a nerve conduction test or brain scan yet as this might help to precisely diagnose wether you have pd or atypical parkinsonism.
The reason I say this as I seen orthopaedic surgeon today and he told me there is both good news and bad. The good news was that I did not need an operation, the bad news was that it was clear that I have atypical parkinsonism. The brain scan showed that there was upper anterior horn damage and that was the reason for the abnormal nerve conduction test. He also concluded that it was my neurologists call on exactly which atypical parkinsonism it is. I see my neurologist in December, meanwhile the anxiety increases.
i guess i am not as knowledgeable as i thought. I did have a DAT scan and it showed decreased dopamine levels. BUT, don't PD and Parkinsonism both have a decrease in dopamine levels?
All I know is that my dr keeps referring to my symptoms as Atypical or a form of parkinsonism. i was progressing very rapidly last year but have stabelized since i quit working. I am on 1 Sinemet 3x/day but don't have on or off periods. Should i be concerned whether it is PD or Parkinsonism?
You are as confused as I am. I am taking 250mg sinemet 5xday and have found some benefit i.e rigidity and tremor has eased somewhat but is on and off. Unfortunately night terrors, chronic fatigue/nausea,migraine,constipation,swallowing,muscle spasms have not improved. However It is only my opinion that it would be beneficial if you're neuro could tell you specifically which part of your brain is affected as upper and lower motor neurons affect our physical movement in different ways. You definetly need to have skin/muscle biopsies, lumbar puncture,blood/urine samples etc to rule out/in other diseases, some of these tests are pretty invasive and unpleasant but I now realise how important they were. I now know that because my problems ly in the upper anterior horn motor neurons along with the symptoms I experience that it is more than likely that I have either mnd,als or pls. Hopefully it is the latter but I am just taking each day as it comes and trying to be positive.
Keep asking questions and get as much advice as you can from you're neurology team.
Man, and I thought I had a lot to put up with. I think you must be one tough individual to endure all that. Maybe you are better off not getting some name put on it that may be wrong and keep doing the analysis, urine etc until they find some thing. Copper in urine is a huge find and points to possible treatments. I wish you luck . Please continue to post here and let us know how you progress and get it off your chest if you like. Good understanding people here that maybe can help you with lessening some of the symptoms you listed.
Thanks for your kind reply. I will keep you all posted on the results of my latest tests due in January 2018. Good luck Gymbag now and into the future!
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