I am sitting in the hospital right now newly diagnosed with MS. I've had ME 12 years. 2 years ago my MRIs were clear and now they are not.
I know some ME patients have lesions. My doctors here are not ME literate. Has anyone else been diagnosed with MS? or misdiagnosed? how do you tell an MS patient from an ME patient with lesions.
I am sorry to hear that you are in this situation.
I think it is generally agreed that there is no single disease called ME. ME is the term used for all those diseases A,B,C,D,E, ... that can cause roughly the symptom pattern of 'CFS' and which for any particular person have not yet proven to be a known disease like X,Y, Z ...
If we assume that your current doctors are reading the MRI correctly then it will show areas of demyelination. People with ME may have abnormal patches on their MRI scans and anything abnormal is a 'lesion' but areas of demyelination are usually reasonably easy to distinguish (not always). If you have areas of demyelination then that is probably clear evidence of MS.
The question then is whether your previous ME was due to small episodes of demyelination that did not show up on previous scans. If the symptoms of ME depend on the brain stem and hypothalamus then a very tiny lesion might I guess produce ME symptoms and not be visible. Then your previous ME (X) would have proven to be a known disease (A). On the other hand statistically we would expect a few people to get an ME type disease that is not MS and then get MS later quite by chance.
I doubt that you can tell the difference by looking for special features of ME, because these are so variable from person to person and MS might be able to mimic any of them. On the other hand, if your previous ME in fact has tell tale features of MS then it probably was MS all along. The telltale features of the common relapsing remmitting form of MS are separate episodes, each with
different sorts of symptoms, which tend to improve partially over time. By different I mean that one time you might have tingling in the leg and another time blurring of vision. You do not get the same pattern of symptoms cropping up time and again. Each episode is something new and either fades away or just stays there.
So maybe the question is whether you have neurological symptoms in a particular place now and did you have neurological symptoms in other different specific places over a period of time in the past.