Background: MRI for an unrelated reason found lesions “highly suggestive of MS” on my brain last summer. I saw a neurologist in April this year who said he couldn’t diagnose me without further tests, but that unofficially he felt it was extremely unlikely to be anything other than MS.
At the time of my first MRI last year I was asymptomatic, but in retrospect I think I have probably had a couple of relapses over the last few years. I believe I may now be relapsing as I have started experiencing various new symptoms since January of this year. These have included shooting pains in my ears and jaw, which feel like descriptions I’ve read of trigeminal neuralgia, as well as vertigo and some balance issues. I also have overwhelming fatigue, which I also experienced in the couple of past occasions I now think were probably MS relapses.
I had a further MRI a few weeks ago, and have been referred to another neurologist who is an MS specialist (appointment at the end of June). Today I received a letter from him saying that he’s reviewed my latest MRI and there are no new lesions on my brain, although “there is possibly a small lesion in the upper spine”. As I hadn’t had a spine MRI before we don’t know whether that’s new or has been there a while.
I was a little surprised by this, for a couple of reasons. Firstly, I’m confused by there being “possibly” a small lesion in my spine - shouldn’t that be a yes or no situation? I was also pretty much expecting to hear I had a new lesion due to the symptoms I’ve been experiencing since January, but I assumed it would be more likely to be in my brain than spine. From what I understand, spinal lesions are more likely to cause more severe and obvious symptoms than what I have. So if this “possible” one is new I don’t know if it’s likely to have caused the symptoms I have?
It’s all got me doubting myself. My symptoms are really variable and unpredictable, so I already have times when I wonder if I’m just imagining it all!
Obviously I know I need to talk to the neurologist when I have my appointment at the end of this month, but in the meantime, I wondered if anyone knows if it is possible to have a long-lasting relapse including new symptoms, without new lesions appearing?