Poll: Neurological Symptoms or No Neurological Symptoms

[Justin30]

Have everyone,

Starting this Poll just out of curiosity and to inform people that they they are not alone.

When you pic your answer *PLEASE NOTE THE NEURO SYMPTOMS YOU EXPERIENCE*

*Note most of us get brain fog so keep this one out Im refering to the really weird stuff*

This I feel will give some relief to know that others experinece weird stuff as Part of ME cluster.

Ill kick it off and provide an example.

Thanks in advance for your input.

 

[Justin30]

For me I have twitching, jerks, OI, Blurred vision, pain sometimes not eleviated by meds, anxiety, sleep problems, blurred vision, numbmbness, tingling, weakness, siezure like episodes partially conscious and blank outs.

Could be more but thats all I can think about.

 

[trishrhymes]

Problem - how do you define neurological symptoms - do you just mean brain fog, or do you include things like pain and headaches and gastrointestinal symptoms and POTS and tachycardia and a whole host of other symptoms that probably have a neurological component?

 

[halcyon]

The usual ME type stuff: balance issues due to vestibular neuritis, hyperacusis, tinnitus, muscle twitching, paresthesia, autonomic neuropathy, postural tachycardia, etc.

 

[Justin30]

The usual ME type stuff: balance issues due to vestibular neuritis, hyperacusis, tinnitus, muscle twitching, paresthesia, autonomic neuropathy, postural tachycardia, etc.

Hows your quality of life are u homebound?

Anything that helps?

 

[halcyon]

Hows your quality of life are u homebound?

Yes homebound and in bed most of the day.

Anything that helps?

The muscle twitching and paresthesia have improved over time on antivirals. I'm worried that the remaining neuro stuff is going to end up just being permanent nerve damage.

 

[Effi]

Apart from brain fog (one of my most debilitating symptoms) and ANS dysfunction (which is neurological too, but not what you mean?), I have constant tinnitus with occasional worse flare ups, reduced fine motor skills and depth perception, flare ups of trigeminal nerve pain, eye floaters/perceived flashes or dots of light, extreme sensory hypersensitivity, OI. I'm probably forgetting a few. I'm housebound, mostly sofa bound (due to OI).

 

[TrixieStix]

vision disturbances, facial paralysis, uncontrollable jerking on limbs and head, tinnitus, parasthesias, circadian rhythm disorder (delayed sleep phase disorder)...

 

[Justin30]

I dont like "liking" your posts but this feedback is important.

Great input so far.

 

[Forbin]

The usual ME type stuff: balance issues due to vestibular neuritis, hyperacusis, tinnitus, muscle twitching, paresthesia, autonomic neuropathy, postural tachycardia, etc.

"Vestibular neuritis" is an interesting distinction to me because many people associate their ME balance issues with hypotension (usually upon standing). This can certainly happen, but the balance problems (and sensations of motion) I'm familiar with have not been related to position or drops in blood pressure, but have, instead, been fairly constant, even when lying down. I think "vestibular neuritis" is a more probable explanation in this case.

Some of the viruses that have been associated with vestibular neuritis or labyrinthitis include herpes viruses (such as the ones that cause cold sores or chicken pox and shingles), influenza, measles, rubella, mumps, polio, hepatitis, and Epstein-Barr. Other viruses may be involved that are as yet unidentified because of difficulties in sampling the labyrinth without destroying it. Because the inner ear infection is usually caused by a virus, it can run its course and then go dormant in the nerve only to flare up again at any time. There is currently no way to predict whether or not it will come back.
http://vestibular.org/labyrinthitis-and-vestibular-neuritis

According to the same website (quoted above), labyrinthitis is distinguished from vestibular neuritis by the involvement of hearing changes (including tinnitus).

I guess I'm just positing that there may be two different mechanisms leading to "dizziness" in ME patients, reduced blood supply via hypotension and direct viral inflammation of the vestibular nerves.

In the case of vestibular neuritis, the virus responsible might not even be related to the cause of ME, but rather could be something dormant (perhaps from childhood) that was reawoken by ME.

 

[TiredSam]

Brain fog, headaches, and on a bad day increased sensitivity to sound and clumsiness which I never had before (dropping things, stabbing myself in the face with a fork because I missed my mouth while eating, that kind of thing). Am I allowed to click "yes"?

 

[Effi]

stabbing myself in the face with a fork because I missed my mouth while eating

I should add that to my list too - stabbing my face and/or hitting my teeth. Oh, and not being able to hold different objects in two different hands. If I don't concentrate, I'll almost certainly drop one, or both...

 

[Mrs Sowester]

I have hypotension dizziness most of the time and vestibular neuritis on the rare occasions I get a cold or bug, this doesn't usually rectify itself without a short course of Cyclyzine (sp.?)
I have headaches, nerve pain in my neck, right optic nerve pain, visual distortions, light and noise sensitivity, the usual brain fog, word finding, information processing, concentration...
Things I'm not sure others have are transient numbness in right side of my face, pressure sensation inside ears esp. right ear, pain around right ear and this year's exciting new symptom a lisp esp. when I'm tired.
Does anyone else have a lisp? Got to admit it's been troubling me.

 

[Mij]

Vertigo when I have viral infection and equilibrium issues, my head feels as though it's rocking/ swaying from side to side and very intense when I overdo. I sometime feel as though I'll fall over or walk into someone. I'm not sure why this a happens.

From day one of illness I had vertigo and problems with equilibrium, I will stagger as though I'm drunk.

@Mrs Sowester I used to lisp when I would go over my energy envelop, so for me it wasn't neurological.

 

[Mrs Sowester]

Thank you @Mij it's reassuring to hear that it isn't just me. I haven't a clue whether the lisp is neurological.

 

[Angel27]

Dizziness on standing, pressure in ears, intermittent blurry vision, clumsiness, cognitive dysfunction (brain fog, confusion, memory problems, attention problems, etc), muscle weakness and heaviness, brain zaps, migraines...

 

[Hip]

Given that myalgic encephalomyelitis is classified as neurological disease, I should expect that you will get close to a 100% "Yes" response in this poll.

I guess only people who may vote "No" are those with relatively mild CDC-defined chronic fatigue syndrome who don't have any orthostatic intolerance symptoms (POTS, NMH), nor dizziness, blurred vision, paresthesias and skin tingling, etc.

Still, it is a good idea to run this poll, as it helps underline the fact that ME is neurological.

 

[NL93]

Sensitivity to light and sound, dizziness, walking unsteady, muscle weakness, heavy feeling in entire body, muscle twitching, pins and needles sensation in legs and arms, seizure like episodes, loss of depth perception, derealization, ringing in ears, blurry vision, sleep paralysis

 

[Hip]

For me I have twitching, jerks, OI, Blurred vision, pain sometimes not eleviated by meds, anxiety, sleep problems, blurred vision, numbmbness, tingling, weakness, siezure like episodes partially conscious and blank outs.

When you mention anxiety, this is one of the neuropsychological symptoms found in ME/CFS (these appear in the mind, rather than the body). In this poll, are you including neuropsychological manifestations as neurological symptoms, or are you confining the poll to bodily neurological symptoms?

The Canadian Consensus Criteria (full version) lists ME/CFS neuropsychological symptom as:

Neuropsychological Symptoms:
loss of adaptability
worsening of symptoms with stress
emotional flattening or personality change
anxiety and/or panic attacks
reactive depression

 

[Mrs Sowester]

A list of options would be helpful for this thread