Hi. In 2007 I had three days where my left side of face and arm were numb. My MRI showed a lot of white matter in my brain. There were no lesions on my spine and my spinal tap came back clear. The same summer they found a PFO and closed it. Suspicions were that I had a mini stroke. Fast forward three years and my left knee becomes numb. I see a different neurologist in a different state and after doing more MRIs and blood work he diagnoses me with MS.
I was on Avonex for three years and now Tecfidera three years. Since then my brain MRI stayed the same, still no lesions on my spine or neck. I just moved again and the new neuro thinks I might not have MS. I have no had any more episodes. My only symptoms are a weak left leg, electricity shooting down my arms and in the past I had spastic toes. He wants to do another spinal tap. If this one comes back negative then he thinks I should go off the drugs. What is your opinion?
I've doubted that I had MS this whole time. It was good to hear him say it before I expressed my opinion. Can an MS person really be this healthy for almost ten years now? Wondering about all the white matter lesions in my brain, but he thinks it could of been left over from possibly having mini strokes since my pfo was pretty large. Thank you!
The diagnosis of Multiple Sclerosis requires doctors, usually neurologists, to exclude other potential causes of your symptoms or history, examination findings and diagnostic evaluation findings. To do this requires the doctor to have expertise in neurology and Multiple Sclerosis and expertise in the interpretation of MRI findings. They must also understand the necessity of waiting to make a diagnosis if there is insufficient information available to be confident in the diagnosis at the time of the initial evaluation. This is a complicated process that leads to many errors in practice. These errors include:
1. Misinterpretation of symptoms as presented by the patient
2. Failing to detect certain findings on examination or over interpreting findings
3. Failure to interpret MRI findings correctly.
4. Failure to recognize “red flags” in the diagnostic evaluation such as persistently normal spinal fluid or a stroke like presentation
All of these errors are common and often lead to patients being placed on treatments unnecessarily
Based on the information provided I can not tell you if your initial diagnosis was correct. You may benefit for the expertise of an MS specialist, if you have not already been evaluated by one.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
Professor of Clinical Neurosciences
University of California San Diego