I saw a neurologist about a month ago and was told I have dystonia, because my head was nodding a bit. I was given injections in the back of my neck, but they didn't stop the nodding, they just made my chin fall onto my chest. I now have a tremor all over, especially in my chest that makes me feel breathless. I suppose I've had it for a while now, but it happened gradually and I didn't notice it. My hands don't tremble, but my right foot does. I've had restless leg syndrome for about seven years, but it is controlled by Pramipexole.
I've been reading the other posts, and someone has written about an internal tremor. that's what I've had for nearly a year but now my family say they can see my shoulders tremble.
How do I know if this is Parkinsons? I really do need some advise please. I have another appt. with the neurologist Dec. 19th. but that seems a long time to wait.
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patchworker
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Diagnosis methods vary a lot depending on where in the world you are amongst other things. One method is the DOPA challenge, when the patient is given a dose of L-DOPA and the results observed. This is a bit hit and miss, but better perhaps than the other common way which was guesswork based on symptoms.
However, in some countries there is now the DaTscan, which can show how much Dopamine your brain is producing. I't's not 100% infallible but it is the best yet. It is not an unpleasant scan like the MRI since you don't go in a tunnel.
About 2 thirds of the PD population have "tremor dominant" PD and the remaining third don't have a tremor. At least not one that is evident to onlookers. - I am in this third and do experience this internal tremor. I used to have a jiggling foot when stressed. That seems to have gone now.
I also take Pramipexol but to treat PD. if I don't take it then I get what I imagine is fairly severe RLS.
PD is notoriously difficult to diagnose accurately especially in the early stages. There is no chemical test and due to the variations in symptoms PD cannot be picked out accurately as the only diagnosis possible.
Other possible diagnostic choices :=
Chemical induced PD, inherited PD, Idiopathic (no known cause - this is the majority diagnosis) PD.
ET - Essential Tremor
PSP - Progressive Supranuclear Palsy- 3 variants
MSA - Multiple System Atrophy
CBD - Corticobasal Degeneration
MS - Multiple Sclerosis
and there'e probably more.
Other (sometimes) early symptoms include loss of sense of smell (Anosmia). depression, tremor, handwriting becoming ever more illegible, some complain of Constipation. stiffnes etc. another popular one is reduced arm swing when walking.
PD has so many symptoms from which to choose and we all have different selection / combinations of them.
I recommend you look at the wikipedia page on PD. Most possible symptoms seem to get a mention in there.
It is not too unusual to have two conditions at the same time which definitely confuses the clinical picture. A DaT Scan will be able to differentiate between essential tremor, Dystonia and Parkinson's with dystonia.
Where are you in the world because the availability of this test varies country by country.
Hi Patchworker. I cannot give out advice as a patient, only information! There is no definitive way of diagnosing Pd. However, I am led to believe that the combination of several of its most common symptoms is a good indication of having Pd. If you shuffle, and/or have a tremor (either a resting tremor or essential tremor), and display any forms of coordination problems, you probably do have Pd. Having said this, I will probably get shot down by dozens of people, for which I apologize in advance. If you also have problems with constipation, insomnia, depression, speech, swallowing, choking, short-term memory, smiling, falling, balance and self confidence then you can be almost positive that you do have Pd. No! ingrowing toenails and excessive facial hair are not symptoms! I hope this helps you.
John
The following is a copy from the first part of the Wki. It is one of the best descriptions of PD that I have come across and I suggest that you go there and read the complete description. (Read carefully ,example Hand trembles while relaxed but not while sleeping or concentrating on hand = PD, Hand trembles while concentrating but not while relaxed =NOT PD.) I have seen three differant neuroligists (one died , one quit) over 10 years and at the start of every meeting they began by asking me to do the same hand waving and walking and eye movement tests to satisfy themselves that my condition is not something else but is indeed PD. and every time they say the same thing , you have PD. One told me that some day what we now know as PD will be identified as 8 or 10 differant desceases in the same family. The biggest test is that the medication actually helps. Welcome to Parkyland where nothing is certain, and straight answers are difficult to come by. My best advise JOIN A LOCAL PD SUPPORT GROUP IN YOUR AREA. They will give you a lot of inside information from their expieriances. My second best piece of advice : get advice from professionals and if not satisfied talk to other professionals. (there are differant schools of thought) .
Proper Medication at the correct time, a lot of forced exercise, proper food, rest, determination and a little help from your friends. Good Luck
Jim
Signs and symptoms of Parkinson's disease
From Wikipedia, the free encyclopedia
Signs and symptoms of Parkinson's disease are varied. Parkinson's disease affects movement, producing motor symptoms.[1] Non-motor symptoms, which include dysautonomia, cognitive and neurobehavioral problems, and sensory and sleep difficulties, are also common.[1] When other diseases mimic Parkinson's disease they are categorized as Parkinsonism.
Contents
1 Motor symptoms
1.1 Cardinal symptoms
1.2 Other motor symptoms
2 Neuropsychiatric
3 Sleep
4 Perception
5 Autonomic
6 Gastrointestinal
7 Neuro-ophthalmological
8 References
Motor symptoms
Further information: Parkinsonian Gait
Parkinson's disease patient showing a flexed walking posture pictured in 1892. Photo appeared in Nouvelle Iconographie de la Salpètrière, vol. 5.
Frontal view.
Side view.
Woman suffering from paralysis agitans showing a characteristic type of extension. Photos were taken in 1889 and appeared in Nouvelle Iconographie de la Salpètrière, vol. 2.
Four motor symptoms are considered cardinal in PD: tremor, rigidity, slowness of movement, and postural instability.[1] Other motor symptoms include gait and posture disturbances such as decreased arm swing, a forward-flexed posture and the use of small steps when walking; speech and swallowing disturbances; and other symptoms such as a mask-like face expression or small handwriting are examples of the range of common motor problems that can appear.[1]
Cardinal symptoms
Four symptoms are considered cardinal in PD: tremor, rigidity, bradykinesia and postural instability.[1]
Tremor is the most apparent and well-known symptom.[1] It is also the most common; though around 30% of individuals with PD do not have tremor at disease onset, most develop it as the disease progresses.[1] It is usually a rest tremor: maximal when the limb is at rest and disappearing with voluntary movement and sleep.[1] It affects to a greater extent the most distal part of the limb, and at onset typically appears in only a single arm or leg, becoming bilateral later.[1] Frequency of PD tremor is between 4 and 6 hertzs (cycles per second). It is a pronation-supination tremor that is described as "pill-rolling," that is the index finger of the hand tends to get into contact with the thumb and perform a circular movement together.[1][2] Such term was given due to the similarity of the movement in PD patients with the former pharmaceutical technique of manually making pills.[2] PD tremor is not improved with alcohol intake, as opposed to essential tremor.[1]
Rigidity is a characterized by an increased muscle tone (an excessive and continuous contraction of the muscles) which produces stiffness and resistance to movement in joints.[1] Rigidity may be associated with joint pain; such pain being a frequent initial manifestation of the disease.[1] When limbs of the person with PD are passively moved by others a "cogwheel rigidity" is commonly seen.[1] Cogwheel-like or ratchety jerks are characterized by the articulation moving as opposed to the normal fluid movement; when a muscle is externally tried to move it resists at first but with enough force it is partially moved until it resists again and only with further force it will be moved.[1][3][4] The combination of tremor and increased tone is considered to be at the origin of cogwheel rigidity.[5]
Bradykinesia and akinesia: the former is slowness of movement while the latter is the absence of it.[1] It is the most characteristic clinical feature of PD, and is associated with difficulties along the whole course of the movement process, from planning to initiation and finally execution of a movement.[1] The performance of sequential and simultaneous movements is also hindered.[1] Bradykinesia is the most disabling symptom in the early stages of the disease.[3] Initial manifestations of bradykinesia are problems when performing daily life tasks requiring fine motor control such as writing, sewing or getting dressed.[1] Clinical evaluation is based in similar tasks consisting such as alternating movements between both hands or feet.[3] Bradykinesia is not equal for all movements or times. It is modified by the activity or emotional state of the subject to the point of some patients barely able to walk being capable of riding a bicycle.[1] Generally patients have less difficulties when some sort of external cue is provided.[1][6]
... immobile patients who become excited may be able to make quick movements such as catching a ball (or may be able to suddenly run if someone screams "fire"). This phenomenon (kinesia paradoxica) suggests that patients with PD have intact motor programmes but have difficulties accessing them without an external trigger, such as a loud noise, marching music or a visual cue requiring them to step over an obstacle.[1]
Postural instability: In the late stages postural instability is typical, which leads to impaired balance and frequent falls, and secondarily to bone fractures.[1] Instability is often absent in the initial stages, especially in younger people.[3] Up to 40% of the patients may experience falls and around 10% may have falls weekly, with number of falls being related to the severity of PD. It is produced by a failure of postural reflexes, along other disease related factors such as orthostatic hypotension or cognitive and sensory changes[1]
My husband's neurologists, all three of them, told us that there is no definitive "test" for Parkinson's. There are a list iof symptoms that are progressive that are used to make the diagnosis. A patient like my husband can have Parkinson's symptoms without the tremors, which they diagnosed as "Non Typical Parkinson's." There is still much that is unknown about Parkinson's including what caused the illness.
I would definitely seek a second opinion. Preferably with a Movement Disorder Specialist. Since humans are complex beings there is no black or white with diagnosing a syndrome, especially one as complex as Parkinson's. When my husband first starting showing symptoms, we went to his PMD who wasn't sure and sent us to a neurologist who made the diagnosis but his treatment plan was poor and his followup was worse. We switched to a MDS and his condition greatly improved.
Also don't blame all your symptoms on Parkinson's. We did and my husband nearly died from Pulmonary emboli.
Regarding your concern about wait time, “I have another appt. with the neurologist Dec. 19th. but that seems a long time to wait,” welcome to the club. Of course, supply & demand always play a role, but two month (or longer) wait times are not unusual. Regarding your pursuit of an answer to the question, “how is Parkinsons diagnosed? “ The only correct answer is, “generally, not very well.” Many (most?) of us were initially misdiagnosed and mistreated for months, or years, before receiving a proper diagnosis and treatment. Perhaps this is why the NIH (National Institutes of Health) and NGOs, especially the Michael J. Fox Foundation, have spent millions of dollars in seeking a PD biomarker. Although various diagnosis techniques share some similarities, there are enough differences to make most engineers shudder when they are introduced!
That the diagnosis techniques of the PD community are still emerging should come as no surprise to anyone who has been paying attention to these (trivial?) details. After all, we don’t even know what to call our malady: Is it Parkinson’s disease or Parkinson Disease? Allow me to digress.
A Google search on Parkinson’s Disease yielded 16,400,000 hits.
A Google search on Parkinson Disease yielded 5,560,000 hits.
The “Disorder Index” at the website of NINDS (National Institute of Neurological Disorders and Stroke) - part of the NIH - uses Parkinson’s, although occasionally an NINDS sponsored project will pop up using Parkinson.
Both terms appear in AMA (American Medical Association) publications.
In the NIH-NINDS compilation of PD Organizations they list 5 using Parkinson’s
and 3 using Parkinson in their titles:
American Parkinson Disease Assn
Parkinson Alliance
National Parkinson Foundation *
M. J. Fox Foundation for Parkinson’s Research
Parkinson’s Action Network
Parkinson’s Disease Foundation
Parkinson’s Research Organization
The Parkinson’s Institute and Clinical Center
End of digression and back to your question, “how is Parkinsons diagnosed? “
* Most of the organizations listed above give their answer at their web sites, and I suggest you check them all. One of my favorites is the
Hi Patchworker, I was trying to compose a similar query and then saw your post. I have NOT read the other replies yet as I might get side-tracked! I have just had a DaTSCAN to help the neurologist decide whether I might have Parkinsons or essential tremor. She said that there is NO test for Parkinsons as such, but the test helps to eliminate some possible causes of the tremors. I won't get the 'result' (if any) for three weeks or so.
I have had Writers' Cramp for many years and then developed 'Spasmodic Dysphonia in the late 1990s, for which I had Botox Injections for a few years, until they stopped working. Thus, when I developed tremors two years ago, I assumed that they were yet another form of dystonia and the Neurologist agreed. Two years later 'they' say that there are 'Parkinsonian Features'.
I'll write a separate message when/if a diagnosis comes through and after I have read the other replies to your query. Good Luck.
Incidentally, the DaTSCAN was not scary, just boring - having to lie still for 30 minuits with a small box (ie camera) above your head.
Wow! I've read your replies through three times, and it will take another three times at least to take it all in.
Thank you all for your kindness and help.
I've seen my GP today, (I'm in England) and I discovered something. She could only see a slight tremor of my head, not the violent tremor of my whole upper body that I can feel. But my daughter says she can feel the tremor when she hugs me.
I don't have a tremor in my hands, but I do have odd movements of my lips and jaw, which sometimes feel they are in two separate halves. And my right foot sometimes moves by its self.
I think I walk normally, not with little steps.
Thank you again, I'm about to reread all your replies. I'll let you know what happens when I eventually see the neurologist.
Torticollis or dystonia in the neck can sometimes be a problem.
There are a couple articles here from Neurology Now magazine, which in the US is free. You might see if you can get it in GB. journals.lww.com/neurologyn...
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When do I know if I have Parkinsons. Wondering if its 'in my head' due to 'survivor guilt' (lost parents this year younger sister in 2006
What do we know about ESSENTIAL TREMOR and can you have essential tremor but not PARKINSONS DISEASE?
Not sure what's happening?
I need some advice from the Pros!
So which 'subtype' are you?
