[Begin reading my story with Eyes in the Back of My Head]
When I attended my first ‘newly-diagnosed’ meeting at the Neurology Center, patients were asking each other, “When were you diagnosed?”
The month was September 2005 and I recognized one of the other patients with whom I shared space at the Infusion Center in August. She was one of those MS patients who had received a quick diagnosis, not even requiring a lumbar puncture (aka spinal tap) to test for the presence of oligoclonal bands which are seen in the spinal fluid of 90-95% of multiple sclerosis patients.
“I haven’t been yet.”
That’s right. I had already undergone two rounds of MRIs; the first as directed by my primary care physician to look for the cause of a ‘pinched nerve’ in my neck, the second as directed by the neurologist from whom my doctor wanted an expert opinion. I had one lesion in my cervical spine (neck) but my brain appeared normal, although 5% of confirmed MS patients do not initially have brain lesions on MRI, according to the National MS Society.
It was after the results from the spinal tap came back that the infusion nurse called me on a Friday afternoon to schedule a 5-day course of Intravenous Solumedrol (IVSM) the following week. My road to diagnosis never included a hospital visit.
“So does it say in my chart whether it’s MS or not?” I asked the nurse as she was preparing to start the IV.
“What did the doctor tell you?”
“He didn’t yet,” I replied.
She gets the high-dose steroid drip started.
“Let me go find out what I can.” When she returns to the room of IV-laden folk, she informs me that the doctor is on vacation and that he’ll have to speak with me when he returns.
“But you wouldn’t be here if there weren’t a very good reason the doctor wanted you to have the steroids,” she adds.
I think it was Thursday when the doctor returned from vacation and the nurse grabbed him to come talk to me while I was tethered to the drip. Somewhere between the muttered words, and yes he tended to mutter and I tended to not be able to understand him, he mentioned demyelinating disease. Non-specific demyelinating disease.
It would be another round of MRIs and two more months before I was officially diagnosed during a doctor’s visit in which he never outright said, “You have MS.”
In the meantime I was invited to participate in the monthly ‘newly-diagnosed’ meetings held at the Neurology Center led by my (now) MS Nurse.
So when asked in September 2005, “How long have you had MS?”
My reply was, “I don’t....yet.”
How about you, how long did you have MS before you had MS?