hi, I am a newbie and am waiting for a diagnosis, thoughts please

Hi Everyone

This may be slightly longish as I tell my story so far…

It started a couple of years ago with a circular light in my vision on bending my head, this I still have now. I work for an Opticians so I got one to have a look, thiey didnt see anything. months later a new eye symptom started, I got transient vision loss in same eye, usually lasting about 10 seconds, and seemed to be posture related.Now another strange thing, I was shopping in town with family when my left foot became weak, I said to my husband it is really weird, I keep feeling like I have to really lift my leg when I walk. I still have a weak leg to this day. My optometrist friend decided to refer me to an opthalmologist for now… They did various tests, and an ultrasound which showed some inflammation to optic nerve.

He didnt seem too worried but said, to make sure, they would do an MRI of orbits with contrast. Went back for results last November, and he said, there is nothing too worrying but because of some blood vessel changes in my brain , they would refer me to the TIA clinic ( eeek).

Xmas came and went, I got on with work as I am quite a busy person,and by March i remembered I hadnt heard anything still. I rang the TIA clinic who knew nothing about me, the next day they rang me back saying they had found my referral and it had been all over the place (double eeek).

I got in 2 days later and went in with my mum. he st down and looked at my MRI and said “you have had a stroke” I nearly past out. He said there was such a thing as a silent stroke so I may not have symptoms. He said it would be on right side. I had another MRI of brain that afternoon, he expected lesion to have calmed down a lot since November and not be as bright.But when we looked , it was same. He then wasnt sure what it was and said he would ask colleagues next day and ring me.

He rang next day, and said its not a stroke, they are looking at MS, he will refer me urgently to neuro and ANOTHER MRI of brain .Urgent i now realise doesnt mean the same to them lol.

Anyway, went to neuro, she was nice but wasnt convinced of MS, there were also other lesions ( 10 in all) but not in usual places for MS. I am having an MRI of spine on Friday and depending on results, maybe a lumber puncture.

This is what a copy of GP letter says,in short style by me, can anyone comment please? sorry about long post,

Investigating neuroinflammation

consideration for treatment with intravenous methylprednisolone.

(my symptoms) Also right foot numbness.Weakness in left leg inferring with mobility ever since.

Sub-acute ischaemic lesion in left centrum semiovale with some slight enhancement. slightly raised eosinophil’s at 0.6,and positive P-ANCA.

Significant left lower limb weakness with proximal and distal weakness 4/5. She has brisk reflexes with upgoing plantars.

(then blah blah, what she will do and rule out neurosarcoidosis , she also said in appointment about vasculitis)

What do you think? thanks for any replies


Hello, a worrying time, but you’re at the right place. I hope you get sorted soon, I’ve replied to bump up the comment. Someone more clued up than me will reply soon xxx

Hi I can totally relate to your post, I was the same told I’d had a stroke and the. A diagnosis of MS. I was really lucky though, got some quick referrals and answers, although the answer was a big shock. What it made me realise is that MS is hard to diagnose and they will want to exclude everything else first, your positive P-ANCA will be of significance as could relate to an autoimmune condition which can mimic strokes and MS…(lupus) .you probably want to go and have a chat with your GP xx

Thank you, Vasculitis was mentioned too, might know more after Fridays spine MRI

Good luck with your scan