The New Chapter

  After months of speculation and testing, today I officially received a diagnosis of Sjogren’s Syndrome.  Sjogren’s Syndrome (pronounced show-grins) is an autoimmune disorder where the body’s cells attack the moisture producing glands.  Typically this causes dry eye, dry mouth and fatigue.  In some patients, dysfunction may also be seen in other body systems such as the kidneys, lungs and nervous system.  For more information about Sjogren’s Syndrome, please check out the Sjogren’s Syndrome Foundation website.

In my case, I have diminished functioning in the glands of my mouth and dry spots in both eyes.  Furthermore, it is also believed that my small fiber neuropathy (causes moderate pain, tingling and numbness in both legs) and my POTS (we all know about my POTS issues) are caused by the Sjogren’s Syndrome.  Essentially, my body has been attacking and damaging my nervous system and that has been the underlying cause of the majority of the past health problems.  This could be the answer that I have been looking for all along.  It is a bittersweet moment.

I have been on various medications in the last year in order to mitigate the symptoms of my various health problems.  One of the medications that my doctors prescribed was IVIG infusions.  These were supposed to be monthly infusions via my port in order to help ease the inflammation caused by my conditions.  However, my insurance did not deem any of my health conditions as “medically necessary” to receive this treatment and the claim was denied.  Furthermore, the appeal and peer to peer medical review with my neurologist were denied.  This left me with the option of pursuing the first set of infusions (4-5 hours for five days) as an inpatient in the hospital, but there would be no guarantee that my insurance would cover the infusions in that manner or with subsequent infusions, and there was a strong possibility that I would be billed.  Each infusion could cost anywhere from $5,000-$15,000, not including hospital costs.  That was my first option.  My second option was pursing more toxic medications via my rheumatologist.  My third option was doing nothing.

After over a month of debate, I have chosen option number two.  There were a couple of medications that could have been prescribed but ultimately my doctor prescribed a medication called methotrexate.  Although I have provided a link that discusses this medication, please read it at your own risk.  This is a toxic medication that can cause serious and life threatening side effects.  At higher doses, this medication is used to treat cancer but at lower doses is used to treat autoimmune diseases such as rheumatoid arthritis and Sjogren’s Syndrome.  It is a serious and scary medication to take, however if I end up having no side effects it could be my saving grace.  There is a chance that this medication could help relieve my current symptoms as well as help slow down the progress of the damage for the future.  That is a risk that I am willing to take.

I begin taking this medication today.  I would appreciate thoughts and prayers as I embark on this new journey of treatment.  Thank you.

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