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.).
Meige Syndrome (also known as Cranial Dystonia or Oral Facial Dystonia) and is actually a combination of two forms of dystonia – Eye 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.
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,
Rescue me from this darkness.
I know you are near.
I catch a glimpse of light between sleep and tears.
Roll back these storm clouds, quiet the thunder that booms out “FAILURE” in my ears.
Open my eyes to see your Sonlight.
Let your love rain down on me.
I was getting really tired of sleeping in the chair in the living room for two and a half months and no, it wasn’t a recliner.
Not only was i getting tired of it, I was getting really weepy and had no privacy.
If the guys were raiding the kitchen at 2 a.m., I was listening to dishes, pots and pans, microwave beeps.
If I was napping and someone wanted to watch television, I was no longer napping.
When hubby was up at 5 a.m., so was i.
I had no bedroom door to shut out the late night or early morning noises.
I was so excited that my hospital bed was being delivered!
A hospital bed meant I could move back into the bedroom, shut the door, listen to hubby snore and get out of that chair!
Then it was time for the bed to be delivered.
I had a major melt down.
Where were “we” going to move everything? How do you add a hospital bed to a master bedroom that already has a queen bed, a dresser, a chest of drawers and a bookcase?
Not just that but, the sheets and bedspreads weren’t going to match!!!
My husband very gently asked “Is this about the furniture being moved or a hospital bed?”
How did he get to be so wise?
So the bedroom is very non feng shui and even though I did find a set of sheets a duvet and pillow sham for ten dollars on clearance, that don’t match the queen bed, I did get to sleep in my bedroom and listen to hubby snore.
Getting comfortable took some time.
It’s an air mattress that operates on an electric pump to keep my skin from breaking down.
So, it took a while to get the right fulllness adjusted.
We had a huge freak out in the middle of the night when I heard and felt air leaking.
I woke hubby up and he discovered pin sized holes in the mattress!!
As our eyes adjusted we were confused as to how there could be so many holes in such a perfect pattern!
Then we realized they are meant to be there to allow the mattress to adjust.
It must be one of those things we’ll laugh about ‘some day’.
Interestingly, it took a few hours for my body to adjust and get comfortable in a position much different than i have grown accustomed to in the chair since december.
Finally, sleep came. eight hours of sleep.
Thie next morning as I made my new bed, with the pretty sheets and pillows and duvet, I looked at it much differently than I had yesterday.
Today I was reminded of the day I started using a cane, and then a wheel chair once in a while, and then the power wheel chair and then oxygen.
They are gifts of freedom and life.
They add days to my life and allow for more time with my family.
I’m good with that.
But, that bookcase… it just can’t stay there.