I was diagnosed Feb last year with a large lesion on my spine and a positive LP not to mention a symptoms for years before. Anyway last may I started Rebif and in the summer I had a neuro appointment where I gave my neuro a list of new symptoms. After reading them and a quick physical exam he said that he was worried from looking and my list but from my exam he thought there was no progression and that “my mood” was making things worse. Needless to say I left his room in tears but after calming down I thought he might be right and decided to stop analizing everything and get on with life.
Now fast forward to xmas where I got a numb tongue, fatigue a lot worse and aches all over. Then mid january ended up getting admitted to hospital for a week for ON. I got a brain scan a couple of weeks later and with an apointment with my opthamologist last week was told the results. There were a few areas of demylination but not on the optic nerve. He said this didn’t mean that there was none there as very hard to detect on an MRI especially if not done at the time and after steroids.
So from last year only having lesions on my spine and being of rebif I now have multiple lesions on my brain (no idea of how many or position untill see my neuro) and lots of new symptoms.
First of all im so pissed at my neuro for not taking me seriously and secondly I am now trying to second guess what he will do.
I know DMD’s are only supposed to slow down relapse rates but this seems quite quick to me.
Any advice, guesses as to what may happen next?
Sorry for the ramble but I have no one else to talk to about it as im trying to stay calm infront of my family.