Currently CIS

New diagnosis and before diagnosis
1

Hello!

im 19 and in April I woke up left side paralysed. After numerous test they found it to be a lesion in the brain, the only one too.after 24 hours I started to get better and went home from hospital. 1 week later I was completely paralysed on the left side once more. They found the lesion to have doubled in size. Thy never gave me a diagnosis but CIS (clinically isolated syndrome) was the closest they came.

after a few months I am back to normal other than still feeling the fatigue. They have told me that I must wait and keep going with regular MRI scans to check for any more lesions.

I just wondered if anyone had experienced anything similar and the outcome as at my age I feel like I’m getting anxiety that I could wake up and be paralysed or anything worse any day.

Any advice or stories would be great to hear, it’s a scary boat to be in and I know there’s nothing that can be done but it would be good to know what other people had been through and if it stayed a one off or did turn to ms.

can I also add I had positive oligoclonal bands.

2

i forgot to add I only seemed to get better with steroids which took about 4 days before I got any movement back

3

Hi Chloe, I’m no expert and am awaiting diagnosis having been through various tests. Shouldn’t you be offered DMD? I know it’s hard but try not to stress as MS etc doesn’t like stress and it may increase your symptoms.

I’m sure that someone more knowledgeable will be along soon with more helpful advice.

4

hi chloe

have you read the macdonald criteria which are used to diagnose ms?

it would be worth googling and reading.

CIS is scary but so is ms.

keep a diary of your symptoms and say if any have got worse or are easing up.

see your gp if any of them are a particular worry.

gp can help with symptom management.

anything you tell your GP will go on your medical records.

then when you next have an mri you’ll have all that to tell the neuro.

if you can’t help being anxious, try mindfulness meditation which really does help.

good luck

carole x

5

Hello there!

I was just diagnosed CIS myself. I had a partial central vision loss in my right eye and after steroid treatment it seems like some days my vision is better and some days it’s worse. I have an appointment next week with my Neuro to discuss MS treatments and options.

Thus far, I haven’t decided whether I want to start taking DMDs yet or not as I’ve only had the one symptom, but I’ll wait and see what my neuro has to say.