I’ve had my appointment for a yearly review and looked back at my last letter. It says that there are 2 lesions that could ‘possibly’ be demyelination and that I do not ‘yet’ have MS. Can I request another MRI to check if there is any change? I’ve tried to put it out of mind for a year and just wonder if having 2 lesions is even an issue. I’ve had sclerosis of the eye, but they don’t think it is linked. I also have autoimmune hypothyroidism, pcos and hyperpigmentation so not sure if it is something else hormonal.
Well the report was that the lesions might be demyelination not that it was. Spots on an MRI scan can be caused by something other than demyelination.
The definition of MS is that it is demyelination separated by time and space. So there has to be demylination attacks at different times (further defintion is that the attacks have to 30 or more days apart) and affecting different functional systems of the central nervous system (CNS)(separation in space). (You could Google Mcdonald 2010 criteria.)
So, you might have had one demyelination attack, Clinically Isolated Syndrome (CIS). By definition not Multiple Sclerosis. 50% of CIS do not not go onto MS. (The report doesn’t indicate that it was, but it might possibly be, CIS.)
Optic Neuritis (that does cause of sclerosis of the eye is often counted as CIS but that is if no cause is found. (MS type attacks are defined as not being explained by anything else).
I guess you should forget about it unless you have neurological (MS) symptoms.
Thanks. Does the MRI not show whether it is demyelination then? Other than the headaches near my left eye, which is why I was referred in the first place, and now a stiff face I don’t have any symptoms.
Have you got any other symptoms as well as your eye condition ?My husband suffers chronic uveitis lost central vision in both eyes told on mri scan back in september 2012 had several lesions on left frontal lobe ,february 2013 neurologist made appointments so had other tests took ages after many unexplained symptoms has both spinal and brain lesions after neurologist full examined mri of brain found many old scars going right through whole of brain and told him could of had it years to our horror.When they tell you they have found lesions on brain all sorts of things run through your mind .Try not to worry to much i am sure if they thought it was ms they would do other tests.In the mean time if you do get any symptoms appear go to your gp and tell them to get it investigated
xx julie
Having lesions is worrying. I’m sorry it’s not clear.
I don’t really know anything - just what I’ve read on this and MS Trust site also the Barts and the London blog.
However, “could ‘possibly’ be demyelination” indicates that the radiologist isn’t doesn’t think it’s clear. There’s a sticky at the top of this forum by Karen that gives a good background information on MRI and the brain but your MRI scan is a specific matter that only a neurologist with radiologist can interpret.
Drs are very reluctant to investigate without a definite problem. After a clear incidence of a CIS (Optic Neuritis) (so a 50% chance of going on to MS) it took a few visits to the GP with MS symptoms, to be referred to neurology.
Is having a stiff face new? Or anything else - as Julie says get your GP to have it checked. The doctors have the information and are not checking further. If there are no new symptoms there is no more information for them to work with. Without new symptoms I would put it out of my mind. I would take vitamin D3 supplements but keeping vit D levels up is beneficial for all sorts of things - it’s a vitamin after all.
Thanks. The stiff face has just got gradually worse. I see the neurologist again in September, so will mention it then.