In the previous post, My fingers are numb, should I call the doctor?, I began walking you through the first steps toward a diagnosis. That diagnosis might turn out to be multiple sclerosis, but it also could be something else.
What amazed me in reading the comments for that post were the number of folks who expressed that their diagnosis journey began the very same way. And the question of when to call the doctor was profoundly universal.
So…my primary care physician (PCP) ordered a series of MRIs on my cervical spine (ie. neck). When she received the radiologist’s report, she called and recommended I consult with a neurologist. I picked up my films (the old-fashioned type kept in a large envelope) and the radiologist’s report. In the differential diagnosis section of the report, transverse myelitis was mentioned as was multiple sclerosis. (Always get a copy of your MRI scans and the radiologist’s report for your personal records.)
Please note that when you are referred to a neurologist, it does not automatically mean that you will be diagnosed with MS as there are still many possibilities. The initial appointment with a new neurologist will be a long one. A large portion of the appointment will be comprised of The Precise Neurological Exam. (Follow this link for the most thorough explanation of the neurological exam designed as an educational tool for medical students at NYU.)
Also for that first appointment, come prepared to complete "new patient" forms including a detailed medical history. It would be wise to take with you information regarding past surgical procedures, other health issues, and those of your parents/grandparents (ie. history of heart disease, cancer, autoimmune disorders, etc.) You want to give the doctor as much pertinent information as possible.
Since my MRI had been conducted without gadolinium (a contrast agent injected into a vein halfway through the MRI procedure), the neurologist ordered a new series of MRI scans of the brain and cervical spine, with and without contrast. This is necessary so that active lesions will show up more clearly. Other tests included a battery of Evoked Potentials to calculate the speed and response of electrical impulses over sets of nerves and a Lumbar Puncture to test for oligoclonal banding in the spinal fluid.
It is possible - even after finding a lesion or two on the cervical spine, testing positive for oligoclonal bands in the spinal fluid and positive for damage to an optic nerve during the evoked potentials - that you may not receive a diagnosis of definite MS There are very specific criteria involved in diagnosing MS. For an overview, read By What Criteria and Guideline Were You Diagnosed with Multiple Sclerosis.
From the time I first mentioned the numb/tingly fingers to my PCP and the time which the neurologist had the results from the lumbar puncture, it was three months. There would be two more months and another round of MRIs before I received a definite diagnosis of MS. However, this was over five years after I had had a blinding case of optic neuritis.
The journey can be long for some, and for others it’s a matter of days. Tell us your diagnosis story. Your story might help someone who is searching for clues to the big question - "Do I have MS?"
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.