Hello and welcome
I’ll copy and paste a thing I did a while ago about first neuro appointments, but please don’t be worried about it - think of it as a team effort: it’s your job to provide the information and the neuro’s job to work out what’s going on. Unfortunately this can take a while, so be prepared for a bit of a long haul - you never know, you might get a pleasant surprise and get some answers sooner than expected.
It sounds like you had never had any weird symptoms before the optic neuritis(?), so at the moment I think the key question is going to be is all since then part of the same thing or have you had multiple attacks of something. The reason this is important is that there are various things that can cause one off attacks of neurological symptoms so, if it is all part of the same attack, this may be the only time that something like this happens to you. If the neuro believes it to be more than one attack, then MS is definitely a possibility, but there are other causes too, some of which are relatively easy to treat (e.g. vitamin B12 deficiency).
For now, I recommend not worrying about the future. If this is a one off attack, your future may not be very different at all to how you imagined. If it is MS, it will no doubt be different, but it might be less different than you think as people with MS can still do all sorts of things. There is also no reason that life can’t be long, happy and fulfilling - MS is not something that anyone would ask for, but it is NOT the end of the world.
I hope the neuro appointment goes well.
These are the things that I think help at a first consultation:
No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)
Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.
Take a (short) list of questions if you have any.
Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.
No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.
No.3: Be honest. Do not exaggerate and do not play things down.
No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.
No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.
There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.