Help! Advice for appointment please

Hi everyone! I came on here about a year ago as I thought I had ms then. I was treated for a stroke march 12 as I got a right sided weakness, lost my balance and was generally walking like a drunk! The stroke doctors ref to neuro who sent me to ent! I have had the following tests 1 MRI of head with contrast-negative 2. Lp-negative 3ent did some visual testing can’t remember name but I sat in room with goggles on watching dots!-report said this showed central problem Ent sent me back to neuro. Saw neuro who examined me again, she said I have odd gait, Romberg negative, weakness can’t walk in straight line and fall over when I close my eyes, few cognitive changes as she was barking instructions I could hear words but I could not follow the instructions…am I going mad?? I have dreadful pins and needles in both legs, my legs feel like lead and fatigue is dreadful in all limbs. So neuro has ref me to larger hospital down the road, I googled consultant and he is ms consultant. How shall I prepare for appointment and does this mean it could still be ms??? So confused!

Hello again :slight_smile: Sorry your absence didn’t mean that things had got better :frowning: One of the problems with diagnosing MS is that there is no test that is always positive. This means that a patient with a clear MRI, a clear LP and clear evoked potentials can still have MS (it’s unusual mind). In which case, it’s great that you’ve got this new referral. Hopefully the MS specialist will be able to rule MS in or out for sure and you’ll either get a diagnosis or at least get closer to one. As far as preparing for the appointment goes: write down a short history of what happened when, a list of your main symptoms and a list of any questions you have. It’s the neuro’s job to work out the diagnostic puzzle and it’s your job to provide the information to do it with. It’s all about you, so it’s not too hard, but preparing properly can help to make sure that nothing important gets missed. I’m not on my laptop at the moment, but when I am, I’ll post a copy of an old post of mine about first consultations. It might help. I hope it goes really well :slight_smile: Karen x

Karen thank you so much for post it was helpful amd thank you in anticipation for the other stuff. I had some neuro physio last year and that really helped. I got back to work full time in November but last couple of weeks I have been struggling again. Saw Gp last week and she has put me off sick again! I have very stressful job that requires me to juggle lots and lots of information at the same time, I’m finding it very very difficult! I’m normally a very quick Thinker but last week I was lecturing and half way through day I looked at audience and completely forgot my words! I was really freaked as I think I’m loosing it! It was more than forgetting to post someone’s birthday card or forgetting to buy something at the super market, i wondered if I an getting dementia! Thanks again Karen xxx

I used to lecture and have had the same experience. Horrible :frowning:

If it’s any consolation, it gets easier to cover it up with practice!

Here’s the old post:

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.