The Road to Diagnosis…

ALS is a condition that is considered a rule out diagnosis. What does this mean, you may ask? In essence it means that all other conditions must be ruled out before a specialist i.e. neurologist, will confidently make the diagnosis of ALS. This of course is if the symptoms are not glaringly obvious.

One of the biggest challenges, and the most common thread in ALS information, is the fact that every single patient manifests and progresses differently. Symptoms at onset can be any one of the following or any combination:
*Weakness in extremities

  • Loss of muscle mass or muscle tone in extremities
    *Difficulty walking
    *Tripping or falling
    *Uncontrollable emotional outbursts
    *Muscle twitches everywhere
    *Difficulty speaking
    *Changes in voice
    *Difficulty swallowing

These are just a small sample of how ALS can initially manifest. As you can see many of these symptoms can be associated with a slew of other conditions. Even in combination many of these signs and symptoms can be attributed to a number of conditions.

The following are some of the exams and tests that a patient might be put through in order to arrive to the diagnosis of
ALS:
*A thorough neurological exam
*Blood test for heavy metals
*Rule out if current meds causing symptoms
*Electro myelogram/ EMG
*MRI
*X-rays
*Family history
*Genetic testing

Once again this is a short list. Many patients go through multiple exams and tests and to multiple specialist before a diagnosis is rendered. There is no single definitive test for ALS. I’ve heard of patients taking up to two to three years to be diagnosed. I personally believe that the prevalence of ALS is much higher, many patients pass away before they are diagnosed, just my personal opinion.

My journey, in retrospect began summer of 13, thats the earliest I recall. I was kicking a soccer ball with the kids at a park an fell several times. I srugged it off of course.

Fast forward to late 14 when I noticed I was dropping things. My left hand was weak. A few months later my right hand began to lose strength and now both began to atrophe. By this time I was experiencing muscle twitches everywhere 24/7.

It was when I started having trouble recovering my balance that I became concerned. Early 15 my PCM referred me to a neurologist. This proved to be inconclusive, my PCM was not satisfied, neither was I. On to a second opinion…

Oct of 15, Meg Jankowski Reyes and I got the news. The news that altered our lives.

The Juan and Only

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