First neurology appointment soon

New diagnosis and before diagnosis
1

Hi

just under a year ago I got optic neuritis in my left eye. It lasted for ages and has left my optic nerve permanently damaged so I only have peripheral vision in that eye now. I had 4 MRIs and got The reports this week with a disc of the MRI images. The last report says:

“The scan confirms high T2 signal within the substance of the cord anteriorly, straddling the midline and slightly more on the left side at the level of C1. I also suspect there is a subtle high T2 signal in the right side of the cord at C3.

In the context of previous optic neuritis the appearances are most likely due to demyelination and these short segment lesions would be more in favour of MS than NMO.”

I’m seeing a neurologist for the first time in a couple of weeks. I have other symptoms at the moment including hideous fatigue, tingling in two fingers and an inability to empty my bladder fully. A few years ago I also had a sensation of warm liquid running down my leg.

My question is will all this make it possible to get a diagnosis when I see the neurologist. I’ve heard it can take years to get a diagnosis and I just want to know now.

TIA

Jude

2

hi jude

write down every single random symptom you have.

nothing is too weird, the neurologist deals with weird all the time.

put approximate dates on and whether they improved or got worse.

this is to give the neuro all the information he or she needs.

they may want to run more tests.

if you do get a diagnosis of ms, you should be put in touch with your ms nurse and offered one of the DMDs (disease modifying drugs).

it can be helpful to take someone with you to help you remember what you wanted to discuss and remember what the neuro said.

stay as calm as possible because anxiety can muddle the picture.

carole x

3

Hey Jude, don’t make it bad
Take a sad song and make it better
Remember to let her into your heart
Then you can start to make it better

This may help mult-sclerosis.org

You have had 4 MRI’s; got O/N and never seen a Neurologist?

George

4

Thanks Carole

i have written a list on my phone so I can’t forget to take it! I may add to it a bit more though before the appointment. My partner is coming with me to the appointment so that should help with remembering things as well. I will do my best to stay calm although that’s not my strong point.

Jude

5

Hey George

i was once in hospital with a person who sang this every time they walked past me. They walked past a lot!

Anyhoo, I know it does seem a bit crazy that I haven’t seen a neurologist yet but I think it’s just because of the massive waiting list. The ophthalmologist I saw at the eye hospital ordered the MRIs and in fact one of them was a duplicate. The radiologist scanned the wrong bit and had to call me in the next day to have the correct one done.

Jude

6

good luck with your appointment jude.

get a referral to the bladder and bowel clinic because retaining urine can lead to UTIs.

7

Ok thanks I will.

8

Just thought I’d give a little update. I saw the neurologist today. He was so lovely which was a massive relief as I saw a doctor come through the waiting room who had treated my partner really badly in the past.

Anyway, he said that he thought I had MS but I have to go back for various tests including a lumbar puncture. He said I had changes in my brain and two lesions on my cervical spine and that from the tests he carried out he noticed a slight weakness on my left side. He is referring me to a urologist and the MS nurse who will talk me through all the options with medication. Little bit worried about the side effects of the drugs as they all seem to give anxiety and depression and I already have mental health problems.

I’ve been running on empty the last few days as I’ve been so anxious so haven’t slept much and have been trying the couch to 5K program to help with my anxiety. So fingers crossed for a better night tonight.