I have significant volume loss, am 57 and just diagnosed, with several brain lesions, 2-3 black holes and 2 spinal cord lesions. The only clinical episode I can recall was my CIS in 2012 in which one side of my mouth wouldn't smile and I had 24 hours of double vision in one eye. My Primary Care doctor diagnosed atypical Bell's Palsy after my Brain MRI showed significant volume loss and white matter ischemia as well as a small old stroke which I had been unaware of.
My "Bells Palsy was treated with steroids and antivirals and resolved in 4-5 days. My MS was only diagnosed this year when lesions were found in my cervical spine when an MRI was done prior to epidural steroid injection for degenerative disc disease and scoliosis pain. The spinal lesions were followed up with a Brain MRI and I was appalled at all the damage there.
I have had no relapses but my Neurologist diagnosed me with Relapsing/Remitting MS and I don't understand as I have had no relapses that I know of. Can you help me make sense of this?
People very similar to you are being seen more and more frequently in large MS Centers. As you know, most people are diagnosed with MS at a much younger age, but late onset MS is on the rise. There are several reasons:
1. The early symptoms of MS are often missed or attributed to something else. You received a diagnosis of “Bells Palsy” that was incorrect. Bells palsy only involves facial movements, so the addition of double vision excludes this diagnosis. Using the rule of parsimony, it is most likely that your symptoms in 2012 were related to MS.
2. MRI scans are often misinterpreted. For instance, if you are over 50 years old the radiologist is more likely to call any abnormalities, “strokes” and sometimes this diagnosis is never revisited when new things happen (i.e. they are just called another stroke); but if you are younger the abnormalities on MRI are more likely to be attributed to MS. If you do not have stroke risk factors (e.g. hypertension, hypercholesterolemia, smoking, diabetes or heart disease) then it is even LESS likely that you’ve experienced a stroke. Strokes and MS are both clinical diagnoses supported by MRI, not vice versa.
3. The volume loss can be associated with a corresponding large number of T2 lesions (i.e. the white spots or “lesions” on the MRI) or a relatively small number of T2 lesions. In the former situation (i.e. volume loss with few lesions) the most common scenario in your age group is slowly progressive MS. In the later situation (i.e. volume loss with lots of lesions) the most common scenario in your age group is long standing relatively asymptomatic MS simply expressing itself later in life.
No matter the situation, it is probably important to get CSF confirmation of your MS diagnosis because of your age.
Good luck and I hope you find a good MS specialist to help you out.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.