Poll: Neurological Symptoms or No Neurological Symptoms

[Effi]

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.

That's what I was thinking too, @Hip. Still interesting to see that different people have a different set of neurological symptoms...

 

[cman89]

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.

an issue with this poll, is that everything is neurological in one way or another. For example, my gut issues are caused largely by poor motility, which is very neurological. Muscles are controlled by nerves, of course. Hormonal control can be chemically malfunctioning or it can be neuro based, all in all its the same origin....

 

[*GG*]

I used to get myoclonal jerks. Do have the shakes some times.

GG

Edit: Also get headaches, light headed upon standing, sensitivity to sound and does a crappy memory count?

 

[Little Bluestem]

Clumbsiness, tinnitus, circadian rhythm disorder. Is non-refreshing sleep neurological?

 

[Justin30]

@Hip anythin neurological including neuropsychological

 

[Mij]

I came across Mal de Débarquement Syndrome. I didn't know whether to laugh and since I speak French I can't imagine telling people I have this, it would be almost as bad as saying I have CFS. It does describe what I experience but they don't mention viral episode.

http://www.mddsfoundation.org/symptoms-scale/

 

[halcyon]

It does describe what I experience but they don't mention viral episode.

People here will probably recognize the symptoms of primary endolymphatic hydrops (aka Meniere's disease) and secondary endolymphatic hydrops too, and these are associated with viral infection I believe. These can cause the fullness symptoms that some people report.

 

[hixxy]

Overreactive to sound/light/vibration/smells/taste, generalised dystonia, dystonic attacks, severe anxiety/hyperactive brain/agitation verging on psychosis at it worst (usually triggered by MCAS), neuropathic pain, numbness and tingling, balance problems, myoclonus jerks, blurry vision, muscle tension, feeling like body is buzzing/vibrating inside, severe bruxism/tmj, OI, personality changes, stress intolerance, dilated pupils, inability to focus

probably more

 

[Justin30]

Overreactive to sound/light/vibration/smells/taste, generalised dystonia, dystonic attacks, severe anxiety/hyperactive brain/agitation verging on psychosis at it worst (usually triggered by MCAS), neuropathic pain, numbness and tingling, balance problems, myoclonus jerks, blurry vision, muscle tension, feeling like body is buzzing/vibrating inside, severe bruxism/tmj, OI, personality changes, stress intolerance, dilated pupils, inability to focus

probably more

I can really relate its aweful.

There has been so much feedback in this poll in just 1 day that highlights that this illness is routed neurologically and when I see all this feedback I know that we have just been utterly neglected and dibilitated. Many with true ME seem to be contributing missed DXed.

I just dont know how Drs deny the physical nature of such a high degree of neuro symptoms and further at least my case failed to listen and conect the dots and offer real treatments, solutions, money and reel biological research.

 

[TakMak]

A long time lurker responds...

Pins and needles in my hands and feet - it varies in intensity but is generally worse when other symptoms flare up. My hands often now don't have the fine motor control they once had. Very odd smell disturbances which tends to exaggerate some smells, create whole new ones (a smokey smell is common and can last for days) and generally lessens the ability to smell at all. My sense of balance is not so good these days; I always was a bit clumsy but now I have a tendancy to slowly veer over to one side when I walk.

I've had ME since 1999 (diagnosed in 2002) but in the last two years my symptoms have been getting progressively worse.

 

[ahmo]

No neuro symptoms since I got appropriate amounts of B12. Before that, muscle fasiculations, balance troubles, extreme sensitivity to light and sound, the rest I've mercifully forgotten.

 

[Forbin]

I came across Mal de Débarquement Syndrome. I didn't know whether to laugh and since I speak French I can't imagine telling people I have this, it would be almost as bad as saying I have CFS. It does describe what I experience but they don't mention viral episode.
http://www.mddsfoundation.org/symptoms-scale/

Interesting! Mal de Débarquement (or Sickness of Disembarkment) probably translates more closely into English as "getting your land legs back" after being on a boat (the opposite of "getting your sea legs" when you go to sea). I've always thought this was pretty common among people, but that it usually only takes a few hours to resolve. Chronic Mal de Débarquement Syndrome does seems a pretty apt description of the dizziness I've experienced. I suspect any kind of motion in a conveyance can make it worse. I got a severe increase in my symptoms after an overnight ride on a train.

It's interesting that the web page mentions "intolerance to busy patterns" and symptoms "increased by busy carpet patterns" and long hallways - effects I've noted, but which even otologists (in the 1980's, at least) seemed to find unusual. I think a lot of this is a result of the eyes not working together properly. With the inner ear not directing the eyes correctly, the brain probably becomes confused by repeating patterns at a particular distance, with each eye focusing on a different adjoining pattern. I've had this happen with such varied things as carpet patterns, the vertical groves on escalator steps, and, most profoundly, with chain link fencing.

In all these cases, the eyes are not focused on the same spot, but they think they are. Thus the angle of convergence between the eyes is wrong. The angle of convergence is one way that we deduce the distance to near objects. When it's wrong, or varying, the object can seem to be in motion - or we can. It's basically the trick that makes things seem to pop out of the screen at a 3D movie - or can make it feel like your falling. [Note the misalignment of the left and right images in a 3D movie when you're not wearing the glasses. That produces the perception of depth by messing with the angle of convergence between you eyes.]


Chain link fence texture [where it's relatively easy for the eyes not to converge on the same spot].

 

[Justin30]

No neuro symptoms since I got appropriate amounts of B12. Before that, muscle fasiculations, balance troubles, extreme sensitivity to light and sound, the rest I've mercifully forgotten.

How recovered are you at this point? Are you getting back to a normal life?

 

[Silence]

Tinnitus, floaters, eye flashes, scintilating scotoma, snowy vision, entoptic phenomena, sudden neuro-sensory hearing loss, severe sensitivities to excitatory amino acids from supplements or proteins, muscle twitches, vertigo, disorientation, head/brain zaps and pains, whole body heaviness, migraines, anxiety/ panic attacks, outburst of anger, olfactory and auditory hallucinations, lactic acid burning in brain, sudden loss of propioception, parasthesia, uncontrollable goosebumps, bounding pulsation in brain, fullness/ pressre in head, derealization, and this weird thing where i cant discern whether an old dream i had was actual reality or not.

 

[Seven7]

DEpth perception issues, Drop things with left hand (if I am not thinking on what I am doing) and this is the sign I am overdoing. Brain fog and memory issues.

 

[PennyIA]

Many of my nuerological issues have decreased (between treating b6 toxicity and being in remission). But I still have an issue with brain fog, and mild OI even when most of my other symptoms have lessoned.

Nuerological issues that seem to have been resolved (well, at least until I crash again, then who knows):
Severe OI
Word identification
parathesis
difficulty registering temperature on one side of my body
stocking glove syndrome
blurred vision
shaking hands