Hi everyone. I have ataxia with my multiple sclerosis and wonder if any of you have what I call ‘dizziness’. It’s called a lack of ‘proprioception’ , where the brain doesn’t automatically know where the rest of the body is, even though the person knows where the legs and arms are, the brain is not getting the signal … so the brain is always panicking, wanting the rest of the body to stop floating in the air. But this feeling never ever goes away. It only stops when I lie down. I’ve had this for 4 years day in and day out. I wonder if any of you have this problem with your ataxia, and if it could be called ‘dizziness’ when you try to explain to other people what it is.
I have dizziness when I stand, or turn quickly, but in my case I don’t think it relates to Proprioception. I’m always aware of where parts of my body are.
I’ve posted the following for anybody who isn’t sure what Proprioception relates to. Scroll down to Proprioception
Ataxia–Recognition and Approach
Ronaldo Casimiro da Costa, DMV, MSc, PhD, DACVIM (Neurology)
The Ohio State University Columbus, OH, USA
Ataxia is the same as incoordination. It is one of the most important neurological signs to recognize due to its importance in localizing lesions within the nervous system. Ataxia is an inability for the patient to coordinate the position of its head, trunk and limbs into space. Ataxia is a sensory, not motor dysfunction that can only be identified when the patient moves. The type of the ataxia is characterized through a complete neurological examination (mental status, gait and posture, postural reactions, evaluation of cranial nerves and spinal reflexes and pain perception). Special attention should be given to the gait and posture.
Ataxia and weakness (paresis) are often confused with each other. The main difference between ataxia and paresis is that ataxia affects coordination without affecting strength, while paresis affects only strength.
Diagnostic Approach
A detailed history should be taken to assist in the identification of the cause of the ataxia. While most patients with ataxia have a primary neurological disease, it is important to know that metabolic diseases (e.g., hypoglycemia, hypocalcemia), toxins (e.g., lead, organophosphates), and drugs (e.g., Phenobarbital, metronidazole) can cause ataxia. Once a detailed history is obtained, physical and neurological examinations should be performed. The neurological examination enables the clinician to identify the type of ataxia. Once the type of ataxia is identified, further diagnostic tests should be performed according to the type of ataxia and the lesion localization.
Types of Ataxia
There are 3 types of ataxia, namely proprioceptive, cerebellar and vestibular.
Vestibular ataxia is the easiest to recognize. Vestibular ataxia is characterized predominantly by a head tilt, the side of the head tilt usually indicating the side of the lesion. Other common signs of vestibular ataxia are leaning, falling, rolling, occasionally circling, strabismus and nystagmus. The severity of vestibular signs depends on a number of factors, but it is usually worse in the acute phase of the disease. It is important to differentiate between central and peripheral central vestibular disease because the differential diagnoses and prognosis differ greatly. Patients with central vestibular disease have changes in mental status (most commonly somnolence) and deficits in proprioceptive positioning and/or hopping. Vertical nystagmus or positional nystagmus (one that changes direction when altering the head position) may also be seen. The proprioceptive positioning deficits are ipsilateral to the head tilt, except in cases of paradoxical vestibular syndrome, where proprioceptive deficits are contralateral to the head tilt. Central vestibular signs are associated with rostral medullary lesions (brainstem) or with lesions in the flocculonodular lobe of the cerebellum, and are commonly caused by encephalitis or tumors. In peripheral vestibular disease, as the lesion involves the inner ear receptors located outside of the brain (petrosal part of temporal bone), the patient does not display changes in mental status or proprioceptive positioning deficits. The nystagmus is always in the same direction, either horizontal or rotatory, but not vertical.
Cerebellar ataxia is characterized by dysmetria (inability to control the rate and range of stepping movements), which is usually manifested by hypermetria (exaggerated step). It is normally easier to recognize a hypermetric gait in the thoracic limbs. It is important to differentiate this sign from thoracic limb spasticity or hypertonicity, which often accompanies proprioceptive ataxia secondary to cervical myelopathies. Hypermetria is manifested by a prolonged flexion of the step (protraction), while spasticity causes the thoracic limbs to appear rigid or spastic. Other signs characteristic of cerebellar ataxia are head and whole body tremors, intentional tremors, and wide pelvic limb stance and gait. Patients with pure cerebellar ataxia do not display weakness (paresis) or proprioceptive positioning deficits, as they have no involvement of the upper motor neurons, or conscious proprioceptive tracts, respectively. This can be very useful in distinguishing cerebellar from proprioceptive ataxia.
Proprioceptive ataxia is the type primarily related to spinal cord diseases. This ataxia can be differentiated from vestibular and cerebellar ataxias by the absence of head involvement (tremor or tilt). Proprioceptive ataxia may be seen with brain lesions (brainstem, thalamus, basal nuclei, or cortex), but is much milder, and other brain signs are usually more obvious than the ataxia (somnolence, behavior changes, cranial nerve involvement, circling, seizures). As proprioceptive ataxia is commonly associated with spinal cord diseases, this discussion will focus on this aspect. Proprioceptive ataxia is a phenomenon of the spinal cord’s white matter, reflecting a dysfunction of the sensory tracts carrying unconscious proprioception (dorsal, ventral, and cranial spinocerebellar tracts, as well as the cuneocerebellar tract). Clinical signs seen with proprioceptive ataxia are truncal sway (wobbliness) and abnormal limb stance and gait such as circumduction, abduction or adduction with the limbs crossing with each other as the animal walks. Proprioceptive ataxia is the very first sign observed with spinal cord compression, and may or may not be accompanied by proprioceptive positioning deficits (conscious proprioception = CP deficits or knuckling). Usually, patients with spinal cord disease have ataxia associated with proprioceptive deficits, however, many dogs with chronic spinal cord disease display ataxia, without proprioceptive (CP) deficits. This can be explained by the fact that the tracts carrying conscious proprioception (fasciculus gracilis and cuneatus) are different from those involved in unconscious proprioception and responsible for ataxia. It is therefore the gait examination (presence or absence of proprioceptive ataxia), and not the evaluation of proprioception (knuckling) that conclusively defines the involvement of the spinal cord.
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I have the same feeling. I guess I explain it as dizziness.
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I have this and have always thought the same thing! I loose track of where my legs and arms are. It’s weird…moving my limbs can make me feel like I (my whole body is moving or the room is moving). Like a phantom or distorted sense of movement. On a bad day if I wiggle my little finger it will feel like my chair is swinging back and forth. I think that has to be proprioceptive problem rather than just vestibular. I pretty much always feel like I’m floating or bobsledding when I am still. Moving and flexing my muscles really hard seems to make it better. Like it takes a whole lot of signal to get through the noise. The more feedback I get the better I feel and the better I move. Still have all the incoordination crap but definitely get some improvement when I have the right type of feedback.
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Thanks Beryl for the detailed info. Looks like I have all 3 kinds, but proprioception is milder. I explain it as not knowing exactly where the ground is when I walk. Its also why I grab my cup of coffee in the morning and often drop it or other things I reach for. In darkness at night it requires I use a walking stick as the brain can compensate for lack of vision by feeling where the ground is through the stick. I’ve been using an MS drug for nstagmus (even though I have SCA) that helps mildly stabilize my eye movements which is helping balance. I’m going to see if it will help stabilize the electrical signals to my muscles during exercise as well since once I warm up I start to get dizzy and thus limit how long my muscles can work. When exercising I can create muscle weakness if I workout too long. The commercial MS drug name escapes me, but mine is compounded 4 aminopyradine.
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in the US, 4-AP/Ampyra is available to people diagnosed with ataxia, primarily EA2. Patients seem to have mixed opinions as to whether this medication is helpful or not for any other type. But, at the moment in the UK, it is only available to those diagnosed with MS.
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There’s an easy exercise to improve proprioception awareness. If interested reply. JD
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Yes, any info at all is great!
Yes, I’m writing this way because I’ve received no reply from you. Thank you, Senior48 for offering to tell me an exercise to help my proprioception… I’d like the info!
Jennifer
If the prioperception is only mild, general exercises may be attempted. But, it might be a good idea to consult with a Neurophysiotherapist before trying out any exercises, they might not all be suitable, or beneficial for your specific needs.
Sensory ataxia
This is a type of ataxia that develops due to a loss of proprioception.
Proprioception is a person’s sense of the relative position of neighboring parts of their body. It is a sense that indicates whether the body is moving with appropriate effort and gives feedback on the position of body parts relative to each other.
Sensory ataxia typically results in:
- an unsteady, stomping gait, with the heel striking hard as it touches the ground with each step
- postural instability that becomes worse in poorly lit environments
If a person stands with their eyes closed and feet together, the instability will worsen. This is because a loss of proprioception increases their reliance on visual data.
They may find it hard to perform smoothly coordinated voluntary movements with the limbs, trunk, pharynx, larynx, and eyes.
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Hi Beryl! I took a long time to reply but thought I should tell you how my quest for help with lack of proprioception has been going. I only spoke to a neurologist who was filling in for my actual neurologist recently by phone due to the virus. He said there’s no medication in Canada that’s approved but that a vitamin B12 supplement might help. I ordered some and it does help my nystagmus, at least… So it’s like 2 separate problems, but I thought I’d write about it anyway. And I’m looking into getting a B12 injection but it’s taking time. Very complicated and slow-moving to get help, but I’m glad for the B12 vitamins! Helping the nystagmus(gives me constant double-vision) makes the proprioception ‘dizziness’ feel a bit better.
Hi Jen🙂 It’s good to hear you have made some progress, and it’s interesting to know not all Neurologists come up with the same advice. I have Nystagmus myself, and I found the following link. I’ve been taking VitB12 capsules myself, although erratically, I’ll make an effort to continue with this in future👍
Stay safe
Downbeat nystagmus indicates cerebellar or brain-stem lesions in vitamin B12 deficiency. Mayfrank L, Thoden U. Two cases of vitamin B12 deficiency caused by gastric atrophy are described. Together with the neuropsychiatric features usually associated with this condition, a downbeat nystagmus syndrome was observed.
https://www.ncbi.nlm.nih.gov › pub…
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