What is in a name? Why stop at “variant of” SBMA?

Since my earlier post concerning naming my affliction, I have received feedback from a few sources imploring me to not stop and settle with “variant of” SBMA.  Their point, and it is a good one, is that settling with this disease, we could be short-circuiting the system and missing out on treatments for the appropriate disease.

The answer is short and simple: resources.  I don’t have them. It would be nice to go on taking test after test until we finally get a definitive answer.  However, here’s a bit of a statistic:  As many as 70% of neurological disorders are undiagnosed.  This remands the team to treating symptoms.

I have trouble finding transportation to my current stream of medical appointments.  My wife’s job is the source of my medical insurance.  She cannot jeopardize her employment as it could prove fatal for me.  Thus, she missing a lot of work is not an option.

Then there is the financial side of it.  My co-pays right now are in several thousands of dollars.  The venture down the DNA test was not cheap.  Not even with medical insurance.

So, my situation is strained.  Self-transporting is out.  Arranging transportation for a host of doctor visits, many of which are likely to be out of town, is not an option.  Financing the co-pays of the tests are not an option.

In our discovery and research, we have found that the disease I have, while not Kennedy’s, is extremely close.  The symptoms mimic it in every way.  A disease that has no name, that has all the ear-marks of a known disease, that only has symptoms that can be treated.

The name gives people something to hold on to.  We know the disease is of genetic origin, as we have eliminated all other possible causes.

The symptoms are all we have.  As the mystery continues, so will my use of the phrase: “variant of SBMA.”

Until God shines another pathway for me, this is my journey.

In Christ,

Jay C. “Jazzy_J” Theriot