This article is for individuals who strongly suspect they may have ALS but are experiencing a slow and uncertain diagnostic process.
Diagnosing ALS is a complex and often iterative process. A diagnosis of ALS is often made by excluding other diseases, as opposed to positively identifying ALS itself.
ALS is also rare, meaning that most professionals do not encounter very many patients with the disease in the course of their careers, if they encounter any at all. As such, a person presenting with symptoms of ALS may spend a great deal of time waiting for answers while going through gradual, and possibly repetitive testing, and also being referred to a variety of specialists.
ALS is a very rare disease, and many other diseases present with similar early symptoms. Most people that undergo a diagnostic work-up for such symptoms end up being diagnosed with something else; in most cases, these other diagnoses are far less serious than ALS.
ALS is rarer yet in people who are quite young, such as teenagers or people in their early 20s. People in these age groups are rarely ever diagnosed with ALS.
A person with ALS symptoms may tire of waiting for answers, and begin looking online or elsewhere independently, or even order their own tests. It can be very stressful to have ALS symptoms, but have no clear answer from a qualified individual as to what might really be going on.
Anyone that finds themselves in a situation where they strongly believe that they have ALS, but do not have a formal diagnosis, should take the following steps:
The fundamental goal should be to acquire a referral to a specialized ALS clinic. Such clinics are often much more able to make an accurate ALS diagnosis promptly.
Use the diagnosis tools provided by reputable ALS organizations to build the case that the symptoms being experienced may be caused by ALS, and that a referral to a specialized clinic is justified.
Seek the attention of other professionals if any of the following are true:
It can be helpful to take actions that are that are beneficial to one's well-being, independent of having ALS or not. Examples include:
With or without an ALS diagnosis, it is imperative to live one's life. There is no reason to give in to fear at this stage, especially when the diagnosis may not even be certain.
ALS is a terminal disease, but on average it takes many years to pass away. This means that today, tomorrow, and the near future remain unchanged, with or without the disease.
Life is still happening now, and it is worth living it.