I Just Can’t Sit Still

After 26 years of one wrong diagnosis after another, we finally have an accurate and 97% assuredness that I have Dystonia and Miege’s Syndrome (a specific type of Dystonia.

Dystonia is a movement disorder.

Without giving you pages of information, I will summarize what symptoms affect me and led to this diagnosis.

Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.

There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people are affected in the United States and Canada alone. Dystonia causes varying degrees of disability and pain, from mild to severe. There is not yet a cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are several forms of dystonia and the symptoms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Generalized dystonia refers to dystonia that may affect the limbs, trunk, and other major body areas simultaneously. The term axial dystonia describes dystonia that specifically affects the torso.

If symptoms only occur in “episodes” that last for minutes or hours, the terms paroxysmal dystonia and dyskinesias are used.

The word torsion is sometimes used, usually in reference to generalized, axial, or segmental dystonia. Torsion refers to the twisting element of dystonia. It describes muscles contracting against each other.

If the dystonia occurs with symptoms of additional neurological disorders.

Dystonia can be associated with numerous diseases and conditions. These include specific vascular conditions, infections, brain tumors, metabolic conditions, neurodenegerative disorders, demylianating disorders, and structural conditions.

The classifications above are necessary needed to set the best course for treatment, but for the sake of routine conversation, most people use the terms that describe the most prominent feature of the dystonia (for example, cervical dystonia for dystonia that affects the neck and shoulders; dopa-responsive dystonia for the form of childhood-onset dystonia that has characteristics that resemble parkinsonism.). 

Meiges Syndrome

Meige Syndrome (also known as Cranial Dystonia or Oral Facial Dystonia) and is actually a combination of two forms of dystoniaEye Dystonia (Blepharospasm) and Mouth, Tongue or Jaw Dystonia (Oromandibular).  Meige is named after Henry Meige, the French neurologist who first described the symptoms in detail in 1910. Symptoms usually begin between the ages of 40 and 70 years and appear to be more common in women than men. 

Cause

Blinking is regulated and co-ordinated in the base of the brain, in the basal ganglia, the midbrain, and/or the brainstem.  However, it is considered unlikely that a single defect in any of these areas is the primary cause of the condition.

Current medical research suggests that the condition is caused by a defect in a large network of brain cells.   It is possible that the condition is caused by an abnormality in a control centre in the network that triggers blinking.  This control centre is located in the basal ganglia, a group of nuclei in the brain associated with motor co-ordination.  The muscles that receive their impulses from this control centre are the Orbicularis oculi muscle (surrounding the eye), the Corrugator muscle (which regulates the frown), and the Procerus muscle (which causes the skin to wrinkle horizontally at the root of the nose and controls blinking).

The main sensory nerve in the face (Trigeminal nerve) transmits stimuli to the control centre in the basal ganglia.  When this centre is defective, its response to stimuli such as bright light, or corneal or eyelid irritation caused by wind, pain, emotion or stress, may be amplified.  As a result, descending impulses from the basal ganglia trigger the more pronounced blinking associated with the disorder.

In some cases the disorder is induced by medical drugs, notably those used to treat Parkinson’s disease.  If this cause of the condition is suspected, a reduced dose may alleviate the problem.

So What Now?

We find a neurologist that specializes in movement disorders and my understanding is there is only one recognized in Las Vegas.

We see him for a second opinion and discuss best treatment options.

I will be setting up a Caring Bridge site and also a GoFundMe page.

I’ll keep you updated here and I’ll be blogging my feelings and experiences here as well.

Be blessed and be a blessing,

Blahndie

Left With

by

grace

alone

do

i

wake

every

morning

and

look

in

the

mirror

and

try

to

draw

on

the

face

I

used

to

have

i

put

an

orthotic

in

a

bra

where

i

once

nursed

my

children

comforted

my

husband

i

don’t

look

at

the

scars

in

the

mirror

i

don’t

trust

that

i

am

that

strong

Keeping Up With the Phoneses

I don’t know about you but I am so relieved the elections are over.

It’s a good thing our landlines don’t charge us by the call or minutes, can I get an amen on that?

We were receiving upwards of fifteen calls a day.

Upwards?

I never use that word. That’s your word of the day! Use it in a sentence at least once today.

My mother spent a lot of time teaching my sister and I phone etiquette.

Always smile just before you say hello (the caller can hear it in your voice).

When I worked making cold calls I gained respect for people trying to pay their mortgages and feed their babies by phone sales so I try to be kind and gentle with them when they call me.

Do not take phone calls at dinner. Well now, this one stumps me.

If one shouldn’t take phone calls at dinner, then why is one making phone calls at dinner?

Blame it on the cancer, but this year, I tended to forget my phone etiquette what with all the political calls and the pollsters.

I suppose you could also blame it on caller I.D.

You see back when my mother was teaching us phone manners you never knew who was calling. Maybe your Grandmother, maybe the cute boy in English class, maybe the Principal or your dad’s boss.

Now however, I have a phone that tells me who’s calling. Granted she insists on pronouncing our last name wrong. The telephone lady insists it’s Miss Seaver.

The political calls however were always announced in a proper tone Unavailable, Out of AreaWashington D.C.Searchlight EnvyCarson City Envy or Polly Tickle Call.

The telephone lady would announce and the groans and sighs and eye rolling would commence.

If there was a phone within arms reach we would (and I’m not ashamed to admit this) click the phone “On” then “Off”.

If it was more than an arms length away we would let it go to voice mail all the while rolling our eyes, making impolite faces and mumbling things like “only 22 more days”.

There was a downside to playing this phone roulette. I almost missed telling my son goodbye when he called from the airport and it came up “Private Caller”.

I also nearly missed a Telephone Town Hall Meeting with  Governor Mitt Romney, a recorded message from Fred Thompson with a stirring message on abortion, a recorded message from former President Bill Clinton, as well as messages from Ann Romney, Michelle Obama and two invitations to attend campaign rallies where Governor Romney would be speaking.

All that said, in this month of giving thanks, I am thankful the political calls have stopped and I no longer have to keep up with the phoneses.