Wednesday 12 February 2014

How Long Can It Take To Get Diagnosed?


I wish I could say that my case was found within months or even within a few short years but unfortunately my case has taken 17 years to be diagnosed.  That is a long time to keep believing in yourself that something is terribly wrong when the medical professionals that we hold our faith and health in their hands keep dismissing.  On a side note according to reports I have read the average mean time of diagnoses is 7 years, I was 10 years past that mark to being diagnosed.

Why I started writing this was to show others to keep fighting and never stop believing in yourself.  My friends and family so they could have a better understanding of my daily life. And if one person in the medical field reads this and realizes that they need to really listen to their patients that not everyone is a hypochondriac (as I was starting to believe) or that every over weight person's whole health problems are because they are over-weight (go beyond the physical appearance). This thought saddens me the most when I think back to some of the doctor's I have encountered, they are forgetting the oath that they recite in part: to protect all life, to hold in highest regard one's teachers, to recognize one's limitations, and to renounce self-interest in the treatment of patients. Especially my first doctor whom I was a patient for over 20 years.

With the oath taken ever person going into the medical profession should realize not everything is black and white and you cannot possibly know everything there is to know about the human body. You are not GOD although I have met many who think they are, and once in awhile eat just a little bit of humble pie and admit that maybe I don't know what is wrong with you but let's see if we can find someone who might, because I believe you when you say something is wrong.  (This will be my only bad thing I will say towards the medical profession, I give you great credit for the work you do, just remember it never hurts to think outside of the text books you study from when getting your degree.) If all doctors were of that mindset new discoveries good or bad would never be found. 

A short synopsis of Stiff Person Syndrome:
Stiff Person Syndrome (SPS) is a rare disorder, characterized by fluctuating rigidity and repeated episodes of painful muscle spasms.  Spasms may occur randomly or be triggered by a variety of different stimuli including a sudden noise, light physical contact, or situations that cause heightened emotional response such as anxiety, stress or fear producing situations.  One I will add here that applies for me also is passive and action motion.  Muscle spasms are often very painful and usually worsen existing stiffness, spasms can last several minutes, but can occasionally last for hours.

Left untreated, SPS symptoms can progress to cause significant disability, performing daily activities and routines can cause a patient to have a poor quality of life.  Intermittent aching and tightness in the neck, paraspinal and abdominal muscles.  The rigidity spreads slowly  through the proximal muscles and is often asymmetrical.  Over time this can cause difficulty dressing, walking and bending forward.

The exact cause of SPS is unknown, however studies indicate that it may be an autoimmune disorder.  SPS may be associated with other autoimmune disorders, the most common is diabetes.  Less common are inflammation of the thyroid, pernicious anemia (low levels of red blood cells due to the body's inability to absorb vitamin B12 from the gastrointestinal tract) and vitiligo.  Clinical reports indicate that individuals with SPS also have an increased incidence of epilepsy. 

A long, frustrating and at times depressing journey begins in my life. I'm glad I have a great sense of humor and my best friend who became my husband who never gave up on me. I am about to find out how badly I will need both in the years to follow.

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