Welcome to DiagnosisMS.com!
I was diagnosed with Relapsing-Remitting Multiple Sclerosis December 10, 2008 and have since found myself on a mission to understand as much as humanly possible about the disease, its cause, its symptoms, and the mechanics of treatment for it. Some time ago I began to analyze Multiple Sclerosis and my personal experiences with the disease. My personal story will traverse multiple posts, but it is not an uncommon one for those of us with the disease.
Allow me to introduce myself with a short synopsis.
I am Sara – blissfully married with no children (just mischievous cats), a full time demanding career in technology, a love for art, a love for the country I grew up in and the city where I now live, an endless stack of books at my bedside, and a sense of humor in spite of everything.
With a heavy family history of MS I recognized symptoms in myself for several years, but my concerns were waved away by doctors. Eventually I underwent an MRI after experiencing prolonged muscle spasms and 4 significant lesions (2 enhancing) were visible on my brain. Washing his hands of me, the doctor sent me immediately to a neurologist. Having the exceptional luck of experiencing my first serious MS attack while in the MRI machine, I found myself unable to write or speak clearly caused by partial paralysis in the right side of my face and in my right arm and hand. Communication was not my strong suit for a couple of months. Chemistry and communication with my first neurologist was less than optimal. Our doctor/patient relationship was short lived and I quickly found myself under the care of another doctor. The new neurologist successfully started a course of treatment with Rebif and several muscle relaxers as my nerves and muscles became mutinous as soon as healing began.
Treatment on Rebif lasted for awhile, but I continued to experience relapses and the interferon was on a mission of its own to destroy my liver. The day I ceased Rebif treatment, my liver enzyme levels were about 7 times the high limit of normal. Several months passed during which my liver very slowly began to heal and I battled fiercely with my insurance provider to obtain coverage for Gilenya (fingolimod) – the first oral medication for multiple sclerosis. Following dozens of phone calls and almost as many threats I finally had the privilege of becoming a Gilenya pioneer. To date, my current neurologist has only 2 patients using Gilenya (including me).
Many of my posts on this blog will focus on Gilenya, but with a multitude of medications moving through the FDA pipeline I hope that even more effective treatments will become available. For those of you who have had good, bad, or interesting experiences with other treatments (including alternative therapies) please contact me if you would like to share your story!
That’s my nutshell. We will soon crack it open and I will write in-depth on the (painful) process of obtaining approval for a medication like Gilenya which labeled me an unprofitable insurance client. I’ll tell you about Rebif, about Solumedrol, about Gilenya, and when it comes to things I haven’t tried yet I will do my best to cut through to the facts and provide you with the clearest information obtainable. It is often impossible to find out what you need to know about any facet of multiple sclerosis or its treatments without studying many sources of information – this is one of the most frustrating aspects of the diagnosis.
A diagnosis of Multiple Sclerosis can be overwhelming, even devastating. The truth can be hard to come by, but I will do my best to find it.
Would you like to share your story?