Similar story to many of you here…
Last week I had my first MRI. Today I had a follow-up appointment with my neuro to discuss the results.
Well, the neuro said that there is one small patch of ‘inflammation’ (she didn’t say ‘demyelination’) on the right side of my brain. I can’t quite remember where she said it was now but I think at back near base of skull region? Anyway, she said the area of inflammation matched my symptoms perfectly so that’s the explanation for my symptoms. She said as there is only one she now wants me to have a LP and some eye tests at Addenbrooks hospital. She said the guys there are fab at doing LP’s and will do my eye tests at same time. I presume she means the VEP’s I have been reading about here?
She said that she didn’t feel I would benefit from steroid treatment for this attack as I am almost over it. Still at about 90% recovered, same as when I saw her about a month ago but recovery is good. I am more than happy with that.
She said that this MRI result is more evidence of what we talked about last time (MS) and that a LP will help add more weight to it. She said that they will keep an eye on me over the next two years and see how things go.
I asked if the two Labyrinthitis episodes I had 2 years ago (that she thought may have been misdiagnosed MS attacks) were actually Labyrinthitis episodes and she said yes. I said that’s good news then! She agreed.
So, I feel that it’s still good news, even though I do have some inflammation in one area of the brain, and it looks even more likely to be MS now, it is still only one patch. I know I can’t get a DX with only one area so that’s why she is ordering LP and VEP’s (?) and I know I have to just carry on for another 2 years and see what happens but I feel it’s good news. At least my brain is not peppered with holes!
I know it means more waiting around in the limboland lounge but that’s fine by me. I know I can’t start any DMD’s without a aDX but I am feeling pretty good right now.
I don’t think it was negative at all. No (ish) news is kinda good news right?