Forum

25 y/o - Optic Neuritis, MRI & Neurology

I’m 25 and last month woke up with blurry vision in one eye. It took me 3 days and it progressively worsening before I went to the opticians before being referred to Ophthalmology and from there referred for an MRI.

At the same time, I was researching what could have been wrong and came across Optic Neuritis. I immediately (within 7 days of onset) signed up to a clinical trial on Optic Neuritis and was taken down to Oxford and am now part of a clinical study. Meanwhile, I’ve gone through MRIs and got the results back which show demyelination disease which ‘may be MS’.

I’m awaiting an appointment for neurology for dx.

Symptoms at the moment are just the recovering eyesight in my right eye from the optic neuritis and L’hermitte sign with some burning sensations on my left flank. I don’t really have any other symptoms.

Informing family and friends of the potential diagnosis is probably the hardest thing. Two simple letters have such negative connotations and immediately make people think of wheelchairs, etc.

It’s very difficult to get any sense out of medical professionals. There is no standard diagnosis (more a matter of eliminating what it is not)
There is no standard symptom set or prognosis. Some people get some symptoms, others don’t.

I’m not looking forward to the official dx, but I’ll be glad to get it out of the way in order that I can start with things like clinical trials.

A few questions:

How moral or perhaps even legal is it to take out medical insurance while no diagnosis is formally made?
What should I actually be doing?
I’ve heard a lot about Vitamin D - is it something that helps to supplement?
How long should I expect to be relatively symptom free? I’m assuming the answer is ‘it depends on you’.
How many of the symptoms relapse completely and how many are still retained after remission?

Having read things on these boards, I can already tell they’re going to be a great help.
Thanks.

J

Hi

having been DX this year and gone through the critical illness insurance claim, I can tell you if you have been seen or awaiting any appointments for optic neuritis , they will check & find out , and decline your claim because you didn’t declare it.

sorry it’s probably not what you wanted to hear but they are ruthless with their background checks.

vitamin D can help depends on your existing levels, and regarding the last two questions no one can answer that, it’s all individual , sometimes the symptoms completely go but others may stay, and no one knows how long or how things may effect an individual .

but please don’t jump to any conclusions as to weather you may or may not have ms, wait for tests, and stay away from DR,goggle

good luck

gray

Hi

Im in the same boat as you. How have you got on since this post? Are you any further forward?

linda

I’ve got my next appointment with a neuro on 8th February. I have had an MRI which showed lesions in my brain and spinal cord…however some of them are not ‘entirely typical’ of ms lesions so I think the next step will be a LP.

Symptoms at the moment…right sided weakness, foot drop, fatigue, dizziness and various weird numbness/tingling/pains etc etc etc.

I was told about 35 years ago that i ‘probably’ had MS…and I say probably because the tests they did back then were inconclusive - the LP i had didn’t prove anything. So IF it is MS then i’ve had 35 fairly symptom free years - and it’s only in retrospect that symptoms i have had might be MS related - i’ve been putting it down to anything BUT ms.

I have decided that my new mantra (until proved otherwise) is “It’s NOT MS, It’s NOT MS, It’s NOT MS” If I say it often enough it could well be true.

Be well and happy