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.